A growing number of children with life-limiting conditions (LLCs) are being cared for in paediatric critical care (PCC) settings. Children with LLCs admitted to PCC are at a high risk of developing complications and many die after prolonged admissions. Relatively few of these patients and their parents or carers have had documented discussions about their wishes for care in the event of a serious clinical deterioration before admission to PCC. There is a need for improved understanding of (1) how parents arrive at decisions regarding what is best for their child at times of critical illness and (2) the role of parallel planning and advance care plans in that process. This review examines the complexities of decision-making in children with LLCs who are admitted to PCC settings.
Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. It comprises patient-focused, non-judgemental shared decision making and aims to provide holistic multidisciplinary support for families. In this paper we define and describe one model for providing perinatal palliative care, drawing on the personal and professional experience of the authors.
Measurement of improvement: Effects of changes The patients, parents and staff have been very positive towards One of the regular patients: 'I love Project Play, all the people are so nice and we do something different each week. I can't believe doctors would want to play with me!' One of the most positive aspects of 'Project Play' has been noted by one of the senior nurses who said: 'We had a patient the other day who needed an NG tube passed and was refusing, when she heard she wouldn't be able to participate in 'project play' until it was in she laid completely still and let us do it so she didn't miss a minute. It is amazing!' An anonymous questionnaire was carried out and 22 responses were received (Table 1). Students have learnt to overcome tough communication barriers and make last minute adaption's to play in order to incorporate all children regardless of physical conditions. A key component of Project Play is 'teen club' which runs once a week, a number of volunteers expressed apprehension at the thought of entertaining a group of teenagers, however, many have found teen club to be rewarding and particular beneficial for developing their communication skills. Lessons learnt Project play recruits medical students from all years of study, therefore, there is variation in clinical knowledge. We believed this to be appropriate because we are not providing any clinical care, however a few issues have arose from this. It is vital that MDT members assume that we have no clinical knowledge in order to avoid mistakes i.e. CF patients that can't mix together. Message for others Ultimately we have found project play to be a positive experience for medical students and have ambitions to make it part of the medical school curriculum.
Aim National and local guidance has evolved over the past three years on the optimum timing and locus of delivery of palliative care for neonates with likely life limiting conditions. This study aims to identify common themes and issues which affect this patient group and develop understanding of how hospice care may be used to improve the experience of patients and parents. Method Retrospective review of all neonates referred from a tertiary neonatal intensive care unit (NICU) to a local children’s hospice over a 3 year period. Each patient’s diagnosis, referral timing, extent of parallel planning at time of NICU discharge and length of NICU stay were analysed. Events after transfer, length of hospice stay and final outcome were also noted and simple statistical analysis performed. Results Eight neonates were transferred from the NICU to the hospice and a further two neonates transferred from paediatric services were also included as their discharge planning had begun whilst in the NICU. Referrals were made by a mixed group of professionals and no families self referred. Two had severe perinatal complications, two had life limiting congenital anomalies and the remainder a heterogenous mix of life limiting diagnoses. Mean length of stay on NICU prior to transfer was 19 days. Two died in the hospice within 2 h of extubation and the mean length of stay for the remainder who died in the hospice was 10 days. Parallel planning was in place for two neonates prior to transfer and four were eventually discharged from the hospice; three of these remain alive. One neonate was transferred after death on NICU for post-mortem care and family support. All received personalised care plans from the hospice team before transfer and all families were offered long term bereavement support. Conclusion This case review demonstrates that neonatal end of life care has an inherent complexity, both in clinical conditions and in determining the best care option and locus for the neonate and their family. Hospice care is a valuable resource and can serve the needs of this patient group well.
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