Parental Perspectives

Excerpt

Back in the early 2000s, when I was a junior pediatrician, this was the typical advice that I would receive from my seniors when I was dealing with a case of sudden unexpected death in infancy (SUDI) in the Emergency Department; it was considered appropriate for junior staff to manage SUDI without direct consultant support. Parents would usually be offered an outpatient appointment with a consultant pediatrician some weeks later to discuss the results of the post-mortem examination, but few families attended as they had never met the consultant beforehand. Bereaved parents described saying goodbye to their dead infant in the Emergency Department, leaving the hospital, and never receiving any further information from medical staff about the possible reasons for the death. As a junior doctor, I felt that this process was wrong and that families deserved better care; thankfully, during the next few years the management of SUDI changed dramatically in England.

In 2008, a new joint agency approach (JAA) to investigating SUDI was introduced in England (1); this approach aimed to establish the complete causes for death, including any risk factors, and to address the needs of the family, including the need to safeguard other children. Professionals therefore have to balance the need to forensically investigate the cause of death and offer appropriate support to bereaved families (2). The JAA has been described in detail in Chapter 5, but is summarized here. Police, health, and social care jointly investigate deaths following national statutory guidance (2). The investigation is led by experienced pediatricians and the police response is provided by specialist teams with particular expertise in managing child death and child safeguarding enquiries. Key elements include taking the deceased infant to an Emergency Department, a pediatrician (possibly accompanied by the police) taking a detailed medical history from the parents, a joint examination of the scene of death by police and pediatrician, and follow-up for the parents. There is inter-agency communication throughout the JAA with a case conference to discuss the full causes of death. The process of the JAA is shown in Figure 7.1. Despite statutory guidance, the practice of joint police and pediatric examination of the scene of death is still variable, and often police examine death scenes alone.

Many countries now have Child Death Review (CDR) programs, which may be similar to the JAA, to investigate SUDI. The aim of these programs is to identify the full reasons for each death to help prevent deaths in the future (3, 4). Frequently, CDR includes prospective investigation of unexpected deaths, with physicians obtaining detailed medical histories from parents, analysis of death scenes by police and healthcare professionals, and multi-agency case reviews (5). CDR has the potential to help bereaved parents, as one of their greatest needs is to understand as fully as possible why their child died. Parents may also want ongoing support and follow-up from medical staff who cared for their child (6).

Parental self-blame and feelings of guilt are common following sudden infant death syndrome (SIDS), and this may relate to the lack of explanation for the death (7-10). Detailed SUDI investigation may lead to increased parental understanding about the causes of death, thus alleviating some of these feelings, but self-blame is also a common feature of all types of bereavement (11). Understandably, there is concern that SIDS parents may blame themselves more for deaths, particularly when there are discussions about modifiable factors such as parental smoking. Previously, healthcare professionals were advised to reassure SIDS parents that their actions played no role in the death, thus potentially reducing self-blame, given that SIDS was neither predictable nor preventable (12, 13). Given our current understanding of SIDS, these explanations often seem inappropriate, as many SIDS deaths involve modifiable risk factors relating to unsafe sleep environments, parental smoking, or alcohol consumption and, as such, are within parents’ direct control.

Parents may therefore find SUDI investigations supportive in providing them with a detailed understanding of why their child died, but conversely this information may cause them distress, leading them to question their actions and choices. The process of SUDI investigation itself also has the potential to be highly intrusive for bereaved families, who may prefer privacy during a very emotional period.

As I continued in my higher professional training as a pediatrician, I became involved in establishing the new JAA investigation of SUDI in the West Midlands region of England. This region has a population of 5.6 million and covers an area of 13,000 square kilometres. There are 14 hospitals, 11 different local government areas and 3 police forces. Given the uncertainties about how the JAA could impact on families, I decided to research this further. I embarked upon a mixed-methods study to evaluate the JAA with the overall aim of improving the wellbeing of bereaved parents; this research formed the basis of my PhD (14). I heard firsthand of many parents’ experiences, and these are presented here along with suggestions for improving the care and support provided. These findings along with other results from my PhD have been published elsewhere (15, 16).

The research questions for the study were:

1. What are the experiences of bereaved parents whose infants died suddenly and unexpectedly and were investigated by a JAA?

2. What are the experiences of professionals, relating to bereaved parents, of using the JAA to investigate SUDI?