Paediatric palliative care in the NICU: a new era of integration

We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the principles of paediatric palliative care and how they apply in the NICU, considers who provides palliative care in this setting and outlines the key components of care. We consider how the international standards of palliative care pertain to neonatal medicine and how a fully integrated approach to care may be realised across these two disciplines. Palliative care is so much more than end-of-life care, offering a proactive and holistic approach which addresses the physical, emotional, spiritual and social needs of the infant and family. This is a truly interdisciplinary endeavour, relying on a harmonisation of the skills from both the neonatal and palliative care teams to deliver high-quality coordinated care

Palliative care for children and young people with stage 5 chronic kidney disease

Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of palliative care practice essential to good clinical management: shared decision-making, advance care planning, and symptom management, with particular reference to CKD 5 where kidney transplant is not an option and where a decision has been made to withdraw or withhold dialysis. Some areas of care, particularly with regard to symptom management, have not been well-studied in children and young people (CYP) with CKD 5 and recommendations with regard to drug choice and dose modification are based on adult literature, known pharmacokinetics, and clinical experience

Withdrawal of ventilatory support outside the intensive care unit:guidance for practice

OBJECTIVE: To review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice. METHODS: Retrospective 10-year (2003–2012) case note review of intensive care patients whose parents elected to withdraw ventilation in another setting. Demographic and clinical data revealed common themes and specific incidents relevant to local guideline development. RESULTS: 18 children (aged 2 weeks to 16 years) were considered. Three died prior to transfer. Transfer locations included home (5), hospice (8) and other (2). Primary pathologies included malignant, neurological, renal and respiratory diseases. Collaborative working was evidenced in the review including multidisciplinary team meetings with the palliative care team prior to discharge. Planning included development of symptom management plans and emergency care plans in the event of longer than anticipated survival. Transfer of children and management of extubations demonstrated the benefits of planning and recognition that unexpected events occur despite detailed planning. We identified the need for local written guidance supporting healthcare professionals planning and undertaking extubation outside the intensive care setting, addressing the following phases: (i) introduction of withdrawal, (ii) preparation pretransfer, (iii) extubation, (iv) care postextubation and (v) care postdeath. CONCLUSIONS: Planned withdrawal of ventilatory support outside the intensive care setting is challenging and resource intensive. The development of local collaborations and guidance can enable parents of children dependent on intensive care to consider a preferred place of death for their child, which may be outside the intensive care unit

'Palliative care equals end-of-life care’:barriers to referral in a paediatric tertiary care centre

Background Referral rates to children's palliative care services are consistently low and occur late in the illness trajectory. Previous studies cite healthcare professionals' (HCP) attitudes and knowledge as barriers to referral. The majority of these studies were conducted in the US, where differences in palliative care services limit the applicability of findings to the UK. This paper presents the first ever survey of UK paediatric HCPs' knowledge and attitudes towards paediatric palliative care. Aim To describe attitudes towards palliative care and knowledge of services among HCPs working in a paediatric tertiary care hospital in the UK, and to consider their role in referrals. Methods A survey of closed and opened-ended questions was sent to 923 HCPs in a large paediatric tertiary care hospital. Descriptive statistical analyses were conducted with SPSS, and thematic analysis of open-ended responses with NVIVO software. Results 132 HCPs responded (14% response rate) including 60 nurses, 42 physicians and 30 other HCPs. HCPs were most likely to choose ‘diagnosis’ as the appropriate time to refer a patient to palliative care (48%); only 4% selected the end of life period. 63% disagreed with the statement ‘Palliative care is primarily about providing care at the end of life.’ Yet the most frequently reported reason for previous palliative care referrals was to ‘discuss with parents the option of the child dying at home or in a hospice’ (49%); 50 % of those completing the open text response box indicated that they associated palliative care with end-of-life care and dying. Conclusions Our data suggest that given the HCPs' awareness of the principles of palliative care and knowledge of services, more attention needs to be given to HCPs' underlying association of palliative care with end-of-life. Other factors may also play a role in referral and require further research and consideration

Palliative and end-of-life care for children with diffuse intrinsic pontine glioma: results from a London cohort study and international survey

Background. More than 90% of patients with diffuse intrinsic pontine glioma (DIPG) will die within 2 years of diagnosis. Patients deteriorate rapidly during the disease course, which severely impairs their quality of life. To date, no specific research on this clinically important subject has been conducted. This study aimed to compile an inventory of symptoms experienced, interventions applied, and current service provision in end-of-life care for DIPG