The last 2 years of life for children with severe physical disability: Observations from a tertiary paediatric centre

Vemuri, Sidharth; Baker, Louise; Williams, Katrina; Hynson, Jenny

doi:10.1111/jpc.14092

Cited by 8 publications

(7 citation statements)

References 16 publications

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“…72 We are not good at predicting timing of death, although evidence shows that there is an increase in hospital admissions in the 6 months before death. 73 The benefits of referring to palliative care team are well researched. [74][75][76] Consideration of major surgical interventions such as a tracheostomy to support breathing or repeated admissions to intensive care units owing to respiratory failure often leads clinicians and families to refocus goals of care to comfort measures.…”

Section: Advanced Care Planningmentioning

confidence: 99%

“…Clinical deterioration towards death is not always a steady decline and the individual’s health can fluctuate 72 . We are not good at predicting timing of death, although evidence shows that there is an increase in hospital admissions in the 6 months before death 73 . The benefits of referring to palliative care team are well researched 74–76 .…”

Section: Part 3: Treatment Of Respiratory Illness In Cpmentioning

confidence: 99%

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Prevention and management of respiratory disease in young people with cerebral palsy: consensus statement

Gibson

Blackmore²,

Chang

et al. 2020

Develop Med Child Neuro

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Respiratory illness is the leading cause of mortality in children with cerebral palsy (CP). Although risk factors for developing chronic respiratory illness have been identified, comprehensive clinical care recommendations for the prevention and management of respiratory illness do not currently exist. We invited over 200 clinicians and researchers from multiple disciplines with expertise in the management of respiratory illness in children with CP to develop care recommendations using a modified Delphi method on the basis of the RAND Corporation-University of California Los Angeles Appropriateness Method. These recommendations are intended for use by the wide range of practitioners who care for individuals living with CP. They provide a framework for recognizing multifactorial primary and secondary potentially modifiable risk factors and for providing coordinated multidisciplinary care. We describe the methods used to generate the consensus recommendations, and the overall perspective on assessment, prevention, and treatment of respiratory illness in children with CP.

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Section: Advanced Care Planningmentioning

confidence: 99%

Section: Part 3: Treatment Of Respiratory Illness In Cpmentioning

confidence: 99%

Prevention and management of respiratory disease in young people with cerebral palsy: consensus statement

Gibson

Blackmore²,

Chang

et al. 2020

Develop Med Child Neuro

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“…As the commonest cause of medical admission to hospital in severe CP is respiratory illness, it follows that respiratory illness is a leading cause of reduced health-related QoL. There is also a significant increase in the frequency of hospitalizations in children with severe physical disability in the last 6 months of life ( 15 ). Therefore, referral to palliative care should be considered if the frequency of admissions increases.…”

Section: Why Is Respiratory Illness In Cerebral Palsy Important?mentioning

confidence: 99%

Evaluation and Management of Respiratory Illness in Children With Cerebral Palsy

et al. 2020

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Cerebral palsy (CP) is the most common cause of disability in childhood. Respiratory illness is the most common cause of mortality, morbidity, and poor quality of life in the most severely affected children. Respiratory illness is caused by multiple and combined factors. This review describes these factors and discusses assessments and treatments. Oropharyngeal dysphagia causes pulmonary aspiration of food, drink, and saliva. Speech pathology assessments evaluate safety and adequacy of nutritional intake. Management is holistic and may include dental care, and interventions to improve nutritional intake, and ease, and efficiency of feeding. Behavioral, medical, and surgical approaches to drooling aim to reduce salivary aspiration. Gastrointestinal dysfunction, leading to aspiration from reflux, should be assessed objectively, and may be managed by lifestyle changes, medications, or surgical interventions. The motor disorder that defines cerebral palsy may impair fitness, breathing mechanics, effective coughing, and cause scoliosis in individuals with severe impairments; therefore, interventions should maximize physical, musculoskeletal functions. Airway clearance techniques help to clear secretions. Upper airway obstruction may be treated with medications and/or surgery. Malnutrition leads to poor general health and susceptibility to infection, and improved nutritional intake may improve not only respiratory health but also constipation, gastroesophageal reflux, and participation in activities. There is some evidence that children with CP carry pathogenic bacteria. Prophylactic antibiotics may be considered for children with recurrent exacerbations. Uncontrolled seizures place children with CP at risk of respiratory illness by increasing their risk of salivary aspiration; therefore optimal control of epilepsy may reduce respiratory illness. Respiratory illnesses in children with CP are sometimes diagnosed as asthma; a short trial of asthma medications may be considered, but should be discontinued if ineffective. Overall, management of respiratory illness in children with CP is complex and needs well-coordinated multidisciplinary teams who communicate clearly with families. Regular immunizations, including annual influenza vaccination, should be encouraged, as well as good oral hygiene. Treatments should aim to improve quality of life for children and families and reduce burden of care for carers.

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“…[5][6][7] While there are existing tools to encourage ACP conversations, [8][9][10] there remains inconsistency in this approach for children with LLC. 11 Decision-making often occurs when the child is critically unwell, 12 13 a highly emotional time that is not conducive to making decisions. If parents 14 and paediatricians have not contemplated end-of-life care in advance, they can feel underprepared.…”

Section: Introductionmentioning

confidence: 99%

Conceptualising paediatric advance care planning: a qualitative phenomenological study of paediatricians caring for children with life-limiting conditions in Australia

et al. 2022

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ObjectivesAdvance care planning (ACP) helps families and paediatricians prepare and plan for end-of-life decision-making. However, there remains inconsistency in its practice with the limited literature describing what this preparation involves, and whether paediatricians recognise a difference between the process of ACP and its outcomes, such as resuscitation plans. This study aims to understand how paediatricians conceptualise ACP when caring for children with life-limiting conditions (LLC) who are unable to participate in decision-making for his/herself.DesignIndividual, semistructured, vignette-based qualitative interviews.SettingAcute inpatient and long-term outpatient paediatric care in three secondary and two tertiary centres in Victoria, Australia.Participants25 purposively sampled paediatricians who treat children with LLC, outside the neonatal period. Paediatricians were excluded if they worked within specialist palliative care teams or assisted in this study’s design.ResultsFour key themes were identified when approaching end-of-life decision-making discussions: (1) there is a process over time, (2) there are three elements, (3) the role of exploring parental values and (4) the emotional impact. The three elements of this process are: (1) communicating the child’s risk of death, (2) moving from theoretical concepts to practice and (3) documenting decisions about resuscitation or intensive technologies. However, not all paediatricians recognised all elements as ACP, nor are all elements consistently or intentionally used. Some paediatricians considered ACP to be only documentation of decisions in advance.ConclusionThere is a preparatory process of discussions for end-of-life decision-making, with elements in this preparation practised within therapeutic relationships. Complexity in what constitutes ACP needs to be captured in guidance and training to include intentional exploration of parental values, and recognition and management of the emotional impact of ACP could increase its consistency and value.

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The last 2 years of life for children with severe physical disability: Observations from a tertiary paediatric centre

Abstract: The increase in hospital admissions prior to death in children with SPD suggests an opportunity for greater consistency in offering advanced care planning and palliative care, especially to those with NPSPD.

Cited by 8 publications

References 16 publications

Prevention and management of respiratory disease in young people with cerebral palsy: consensus statement

Prevention and management of respiratory disease in young people with cerebral palsy: consensus statement

Evaluation and Management of Respiratory Illness in Children With Cerebral Palsy

Conceptualising paediatric advance care planning: a qualitative phenomenological study of paediatricians caring for children with life-limiting conditions in Australia

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