Module LBR6247 Paediatric Palliative care
A Critical Review of Literature regarding Parental choices in End of Life Care and the Development of A Rapid Discharge Pathway
Student Number: 10701221
According to the Department of health (2008) ’End of life care focuses on preparing for an anticipated death and managing the end stage of a terminal condition from the point of recognition that the end of life is approaching. This includes care during and around the time of death – and for the family immediately afterwards. It enables the supportive and palliative care needs of both child and the family to be identified and met throughout the last phase of life into bereavement’. Some children and young people will die very suddenly whether that’s through illness or accident, while for other children with palliative care needs, this process may happen over a period of many years. End of life care on a paediatric intensive care unit has undergone enormous change in recent years. In most western countries today the death of a child is a rare phenomenon but when it does occur it is often after a period of intensive and complex medical interventions (Matthews et al 2006). Improving the quality of end of life care has become a national priority (Paediatric Intensive Care Society 2002). Each year, many children die in PICU often following the withdrawal of life-sustaining treatment (McCallum et al 2000, Street et al, 2000). The majority of deaths can often be anticipated, offering health professionals the opportunity to share decision-making with families and manage end of life accordingly. There is a growing emphasis on incorporating the views and wishes of parents (Mayer et al, 2002). The aim of this assignment is to critically review literature around parental choices in PICU when their child is for end of life care and how this has led to the recent development of a Rapid Discharge Pathway in the author’s work place.
The author has worked within a paediatric intensive care unit (PICU) for many years. Currently 80% of deaths within the hospital take place on the intensive care unit. Presently families within this PICU are rarely offered choices at the end of their child’s life; this is due to a number of factors. A small audit was recently carried out by the author and an end of life project co-ordinator looking at the last ten sets of children’s notes that had passed away on PICU. Eight children in this audit would not have been able to leave PICU as they had too many invasive machines and would have passed away as soon as the treatment was discontinued. The two remaining families would have been eligible but were not offered choices; there was no documentation as to why choices had not been offered. When the author first came into post she was told by a doctor not to start trying to get families home as it ‘increased the work load’. Several families have been discharged for end of life care but only through the family initiating the conversation. The author is aware there is a need to bridge the gap between the hospital and community setting; this would enable the hospital staff to feel confident in making referrals to the correct teams and within different regions as the children are from all over the United Kingdom.
Parents have consistently emphasized the importance of receiving honest and complete information in a timely, compassionate manner in a language they understand (meyer et al, 2006; Brosig et al, 2007; Meert et al, 2008,2009). It is very difficult in a PICU environment because at times a clinician may have to speak to a family that they have just met and have very difficult conversations about end of life care and that their child may only have hours or days to live. Suddenly parents are expected to make decisions about end of life care and to overwhelm them with choices at this time is very...
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