1 Understanding childhood deaths: patterns and contributors

2 Child Mortality: E&W, 1985 – 2014 CDOP Source: ONSRecap from introductory day Source: ONS

3 Categories of childhood deathsPerinatal causes Congenital causes Acquired natural causes Acute medical and surgical conditions Chronic illness Life-limiting conditions External causes Accidents Homicides Suicides Unexplained deaths Recap from the overview on day 1 – there are different categories of childhood deaths. The first three groups will include both expected and unexpected deaths. External and unexplained deaths will be covered in the later sessions. Children with life limiting conditions make up an important group and account for anything from 30-50% of all child deaths. They may not always die in a predictable manner or at a predictable time (e.g. a child with a severe neurological disorder may die unexpectedly following aspiration of food due to impaired cough reflexes). Such children may also die of unrelated causes such as an acute medical illness, an accident, or as a result of child abuse or neglect. For most of them, there will be a health team involved with the child and family, either a palliative care team, a hospital team, and/or the primary care team. They may already have an end of life plan in place. In all cases we should strive to ensure that a sensitive and supportive approach is taken. If the death is not expected, a multi-agency discussion should take place including the team that already know the family, to determine if the death can be explained in relation to the underlying condition, and what responses are appropriate to support the family and carry out any further investigations where appropriate.

4 Causes of childhood death England & Wales, 2009-11This slide outlines the different patterns of causes seen at different ages. Emphasize the largest groups in the neonatal period are congenital and perinatal causes. These diminish in relative proportion, but some children continue to die of late effects of congenital disorders or perinatal problems throughout childhood and adolescence. During infancy and childhood, natural causes predominate; numbers and rates fall to very low levels in the middle childhood years. In adolescence, >50% are from external causes. Unexplained deaths are particularly important in infancy. At all ages males have a higher mortality, particularly marked in adolescence. 76% of deaths in first week of life.

5 Congenital and perinatal causes Patterns differ between term and preterm babiesCongenital malformations Perinatal hypoxia Infections Sudden infant death Preterm Babies Problems of prematurity: Respiratory disease Intraventricular haemorrhage Congenital malformations Neonatal deaths – deaths occurring within 28 days of birth – can best be considered separately in term and preterm babies because the causes of death, and the relative importance of different causes of death, are very different in these two groups. In term babies, perinatal hypoxia and congenital malformations are the dominant causes of death (Table 4), accounting for 69% of all neonatal deaths. In contrast, among preterm babies, deaths from respiratory disease and intraventricular haemorrhage (IVH), sometimes collectively referred to as 'problems of prematurity' are predominant. However malformation remains the second most frequent cause of death. These different factors often interact. When, for example, cardiac malformation is combined with prematurity, it is more likely to be lethal than the same malformation in a term baby 3. The main difference in comparison to term babies is that perinatal hypoxia accounts for a much smaller proportion, and infection (including necrotising enterocolitis) a much larger one, of preterm deaths.

6 Congenital and perinatal causesIncreasing survival beyond the neonatal period Improvements in resuscitation, neonatal intensive care, surgical procedures Ongoing medical needs and quality of life issues Main conditions Chromosomal abnormalities Structural heart defects and other anomalies Chronic lung disease, neurological impairment Because of the increasing success of neonatal surgical procedures, renal support and corrective cardiac surgery, improved survival for some malformations, including previously lethal trisomies, has been accompanied by a tendency for some babies to die post-neonatally who would previously have died before 28 days 4. Indeed, each year, 600 children die outside the neonatal period of congenital anomalies and the consequences of perinatal conditions, nearly 1/3 of those dying after infancy (Table 3). Whilst such improvements are welcomed, this can present obstetricians and neonatologists with ethical dilemmas, particularly in relation to resuscitation at birth and intervention with extremely premature infants. Also presents major challenges in relation to provision of care in the community and palliative care

7 Acquired natural diseases (1m -19y) Number = 1,148Other 19% Cancers30% Circulatory10% Infections 8% This chart gives a breakdown of the main ICD groups of acquired natural deaths in infancy (excluding perinatal) and childhood. Key points; Main groups are cancers, neurological, respiratory and circulatory. For any individual cause of death, e.g. asthma, epilepsy, numbers and rates will be extremely low. Although a large proportion of the mortality burden from infectious disease has been eliminated through public health measures, infections remain one of the commonest acquired causes of death in childhood, particularly in the pre-school period. While 11% are directly coded as infections, a lot of deaths in other (organ-specific) categories will be infectious e.g. influenza and pneumonia may be classified under respiratory. Infections may be primary cause of death – e.g. meningococcal sepsis, or may be the final complication in chidlren with other co-morbidities, e.g. secondary infection in a child undergoing treatment for cancer, pneumonia in a child with cerebral palsy. Cancers include solid tumours and haematological. Cancer incidence is increasing, but mortality rates are falling. The neurological category includes cerebral-palsy which could be more accurately included in the perinatal and congenital category. Circulatory: most deaths are from congenital heart disease; acquired cardiovascular disease includes cardiomyopathy-type conditions giving rise to sudden cardiac death or slower onset cardiac failure; and cerebrovascular disease. Other acquired conditions, including surgical conditions (rarely fatal provided they are picked up early), GI, endocrine/metabolic are all rare. Neurological 20% Respiratory 13% Source: ONS,

8 Life-Limiting ConditionsLife threatening conditions for which treatment may be feasible but can fail e.g. cancer Conditions where premature death is inevitable but where there may be long periods of intense treatment e.g. cystic fibrosis Progressive conditions without curative treatment options, where treatment is exclusively palliative e.g. battens disease Irreversible but non-progressive conditions causing severe disability e.g. cerebral palsy ACT suggests 4 groups of life=limiting/life-threatening conditions:  I Life threatening conditions for which treatment may be feasible but can fail e.g. A child with cancer that is unresponsive to chemotherapy, irreversible organ failure of heart, liver, kidney II Conditions where premature death is inevitable but where there may be long periods of intense treatment aimed at prolonging life and allowing participation in normal activities e.g. Cystic fibrosis, a child with muscular dystrophy with steadily decreasing respiratory drive III Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years e.g. Batten’s disease, mucopolysaccharidoses IV Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and the likelihood of premature death e.g. A child with severe cerebral palsy who dies of an acute respiratory infection, multiple disabilities such as following brain or spinal cord injuries

9 Rising National Prevalence of Life-Limiting Conditions in Children in EnglandFraser, et al. Pediatrics 2012; 129:4 e923-e929 METHODS: Children (0–19 years) with LLCs were identified within an English Hospital Episode Statistics dataset (2000/2001–2009/2010) by applying a customized coding framework of the International Classification of Diseases, 10th Revision, disease codes. Prevalence per 10 000 population (0–19 years) was calculated by age, diagnostic group, ethnicity, deprivation, and region for each year. RESULTS: The Hospital Episode Statistics extract contained 175 286 individuals with 1 or more LLCs of which congenital anomalies were the most common (31%). Major explanation for rise has been due to increased survival of children with neurological and congenital conditions. Prevalence has increased over 10 years from 25 to 32 per 10 000 population. Prevalence in the South Asian (48 per 10 000); black (42 per 10 000); and Chinese, mixed, and “other” (31 per 10 000) populations were statistically significantly higher compared with the white population (27 per 10 000). CONCLUSIONS: In 2010, the prevalence of LLCs in children in England was double the previously reported estimates and had increased annually in all areas over the past decade. This clearly identifies an escalating need for specialist pediatric palliative care services. When planning services for these increasing needs, the excess prevalence in ethnic minority groups, especially in deprived areas, needs to be considered. Source: Fraser et al., 2012

10 Deaths in Children with Life-Limiting ConditionsDirect progression of the underlying condition Direct but unpredictable(ed) complication of underlying LLC Complication of the treatment or management of LLC Acute condition unconnected with underlying LLC External causes Accident Abuse, neglect ‘Mercy killing’ Suicide Children with life limiting conditions make up an important group and account for anything from 30-50% of all child deaths. They may not always die in a predictable manner or at a predictable time (e.g. a child with a severe neurological disorder may die unexpectedly following aspiration of food due to impaired cough reflexes). Such children may also die of unrelated causes such as an acute medical illness, an accident, or as a result of child abuse or neglect. For most of them, there will be a health team involved with the child and family, either a palliative care team, a hospital team, and/or the primary care team. They may already have an end of life plan in place. In all cases we should strive to ensure that a sensitive and supportive approach is taken. If the death is not expected, a multi-agency discussion should take place including the team that already know the family, to determine if the death can be explained in relation to the underlying condition, and what responses are appropriate to support the family and carry out any further investigations where appropriate. Unfortunately, not all children with life-limiting conditions get the same high quality service across the country. This process gives an opportunity to improve services for such children and their families.

11 Planned terminal care Anticipatory planning Parallel planningKey aspects of palliative care Includes planning for end of life care Involves early discussions Building of trusting relationships Development of advanced end of life care plans incorporating wishes of family and child/young person What we ‘want to do’ not just ‘what won’t be done’ Clear documentation appropriately communicated & distributed Key themes through palliative care are anticipatory and parallel planning – looking ahead to plan for the possible complications, proactively determining how to manage them, and whilst doing so, parallel planning – planning for the child’s ongoing survival whilst also planning in case of their deterioration into terminal care. This therefore includes planning for the potential terminal care which will necessitate the building of trusting relationships with the family, talking over time, building a plan of the family CYP wishes for their end of life care – not just what isn’t to happen in terms of resuscitation but also what they want to happen across the whole spectrum of symptom control, choice of place of care, dreams to fulfil etc. Its relevant in this context that increasing numbers of familes are chosing for their child’s body to say at home until the funeral – plans which they will be hoping to carry out Clearly these discussions and plans need to be documented and then communicated/distributed in written form to those who need to be aware, whether on a formal end of life care plan form or as written prose/letter Such documentation is increasingly provided, but its still apparent that many children with LLC who are expected to die, do not have written EOLC plans If we bear in mind that increasing numbers of families are chosing to be at home for their death with increasing CCN service provision, then the importance of clearly documented EOLC plans is even more apparent CEMACH report launch highlighted that many deaths of children with LLC occur in hospital still and that an emphasis should be placed in supporting families to be able to receive their terminal care at home The DH data analysis indicates that of those with conditions likely to require palliative care, around 7,000 (74%) of those under 20 years (excluding neonates) died in hospital, 1,800 (19%) died at home, and 390 (4%) died in hospices. York report

12 External causes of childhood deathOther includes falls, other accidents, and undetermined intent Office for National Statistics, DR, 2008

13 Traffic accidents in children and young people

14 Traffic accidents in children and young people32,240 injuries pa 186 (0.6%) fatalities C&YP account for 15% (8%) of all injuries (fatalities) ↑ distance travelled ↓ fatalities Higher on weekdays, peaks at start and end of school day Road traffic casualties make up the highest number of child deaths from external causes in older children and teenagers, but are relatively uncommon in infants and pre-school children. The Department for Transport reported a total of 32,240 personal injury road accidents in children aged 0-17 in 2009, of which 186 (0.6%) were fatal 25. Children and young people account for 14.5% of all road traffic injuries and 8.4% of all fatalities. Over the last 10 years child casualties have declined in spite of increased distances travelled by children. However, some of these gains have been achieved at the expense of children walking and cycling less 26. Boys account for 65% of all children killed or seriously injured on the roads. Overall 54% of child fatalities are car users, 28% pedestrians, 9% cyclists and 9% motorcyclists, although the patterns vary with age. The number of fatalities are low throughout early childhood, but pedestrian and cyclist fatalities rise amongst secondary school-age children and motorcycle and car user fatalities reach very high levels in older teenagers 25, 27(Figure 4). Child road traffic casualties are higher on weekdays than at weekends, with peaks corresponding to the start and end of school, and generally higher rates in the afternoons. Source: ONS data

15 Other accidental deathsDrowning (~40 pa) Adolescent males; 1-4 year olds Accidental poisoning (~40 pa) 80% in adolescents – illicit drug use Falls (~20 pa) Adolescent males; infants and toddlers Fire and thermal injuries (~12 pa) 51% in 1-4 year olds Smoke inhalation Surface burns or scalds Accidental suffocation, strangling, choking (rare) Other non-intentional injuries In contrast to traffic fatalities, other non-intentional injuries have two peaks in incidence – in infancy and early childhood, and in adolescence. Drowning is the second most common external cause of death, followed by fire-related injuries and falls 28. Each year, a total of 38 children and young people aged 0-19 die as a result of accidental drowning and submersion. At all ages, boys were more likely to drown and there are two peaks, in boys and girls aged 1-4 years ( per 1,000), and in boys aged (0.009 per 1,000). There are 22 deaths from falls, with over 50% of these being in adolescent males. Thermal injuries are a common cause of morbidity and hospital admission in children, but are less commonly fatal. There are 12 deaths (0-19 years) each year from exposure to smoke, fire and flames or burns and scalds, 51% of these being aged 1-4 years. Death may result from extensive surface burns or scalds, or more commonly through smoke inhalation. Other accidental causes of suffocation and strangulation are found in young infants presenting as sudden unexpected death in infancy, and in adolescents, in whom it may be difficult to distinguish accidental hanging from true intentional suicide. Choking deaths are rare (8 deaths per year in 0-19 year olds). Similarly, poisoning is rare in childhood (5 deaths of 0-14 year olds each year), although this increases in adolescence with a total of 32 accidental poisoning deaths in years recorded each year (rates of and per 1,000 for adolescent boys and girls respectively). Many of these adolescent deaths are related to illicit drug use, and others may be difficult to distinguish from more intentional overdoses.

16 Patterns of fatal maltreatment, England 2005-11 n=394

17 Unexplained Deaths Recap from Responding course. Unexplained deaths primarily in infancy, but do occur in older children.

18 Epidemiology of SIDS SIDS registrations ONS, including “unascertained”< 1988, 2 per 1,000 live births mid 1990s 0.5 per 1,000 live births Continued slow fall since 1990s Now < 300 SIDS per year in the UK

19 All cause mortality in children aged 0-14 years in European countriesCross country comparisons 1500 ‘excess deaths’ Ethnic diversity ‘Health spend’ Social policy Income inequality Provide hypotheses about optimum configurations but not precise predictions on health outcomes Fig 1 All cause mortality in children aged 0-14 years in European countries (three year moving average)10In UK remains high. Important paper highlighted that fact and drew attention to national variation in health care systems. Identified high mortality in specific disorders affected by health service provision e.g. meningococcal disease , asthma, pneumonia Authors concluded that ‘if UK health system did as well as Sweden, as many as 1500 children might not die each year’. The terms ‘excess deaths’ comes into the lexicon (also used by NICOR) . Particularly emotive. Implies failure. Has come into Dr Foster and SHMI (standard hospital mortality index). Does not recognise fixed factors nor ‘risk-adjustment, not normal variation. Factors that contribute to child death are highly complex and any cross-country comparisons might recognise ethnic diversity, gross domestic product health expenditure, public vs private models of finance, income inequality…as well as structural differences in health policy. Comparison of health care systems may generate hypotheses about optimum configuration services but do not allow precise predictions for health outcomes All cause mortality in children aged 0-14 years in European countries Wolfe I et al. BMJ 2011;342:bmj.d1277

20 Infant Mortality, E&W 2013 Recap from introductory day There are large discrepancies across the country. These data show infant mortality rates in the UK countries and regions; vary from 3.4 to 5.7 per 1,000 LB. If the N Ireland average could be reduced to that of England as a whole, >30 infant deaths per year could be avoided Source: ONS, 2012 – Child Mortality Statistics

21 Ethnicity CEMACH, 2007 White Mixed Indian Pakistani5 10 15 20 25 30 White Mixed Indian Pakistani Rate per 10,000 live children There are ethnic variations, but these are not straightforward and are affected by socio-economic factors, genetic differences, consanguinity, cultural practices etc. Bangledeshi Black African Black Caribbean CEMACH, 2007

22 Child Mortality and Deprivation200 250 1 2 3 4 5 Quintile of the Index of Multiple Deprivation 2004 50 100 150 Number of deaths Data from CEMACH study confirm an ongoing socio-economic gradient. Need to consider what are the aspects of deprivation that lead to excess mortality? CEMACH: 2007

23 Preventable deaths For the purpose of producing aggregate national data, this guidance defines preventable child deaths as those in which modifiable factors may have contributed to the death. These are factors defined as those, where, if actions could be taken through national or local interventions, the risk of future child deaths could be reduced. - Working Together, 2015 Effectively, if you categorise a death as preventable, you should then also specify what the locally or nationally achievable interventions could be

24 Preventable Child Deaths CDOP data, England, 2012-1415% 8% Source: DfE, 2012, 2013, 2014

25 Summary Most infant and child deaths are from natural causesRates of child death are highest in infancy; congenital and perinatal conditions predominate Children with underlying life-limiting conditions make up a large proportion of all child deaths In adolescents, >50% of deaths are from external causes There are lessons to be learnt from all child deaths To be completed