AimsTo assess how many children access palliative care services across NHS Greater Glasgow, their specific needs, if these are addressed by current services, and whether a dedicated palliative care service is required.MethodsA semi-structured survey, containing 22 questions, was sent by email, to all paediatric consultants, associate specialists and speciality doctors in NHS Greater Glasgow between October 2014–April 2015 (107 recipients). Data were analysed using a mixed methods approach; thematic analysis was performed on free text responses.Results76 recipients responded to the survey of whom 95% were consultants, and 83% worked in a tertiary children’s hospital. 54% stated that palliative care comprised < 5% of their workload; compared to 8% stated it was >50%. 69% felt they lacked time, and 67% the resources, to sufficiently address their patients’ palliative needs. The most common palliative needs of patients were identified as immediate end of life care (91%), family support (84%), nutritional support (81%), and social /emotional (83%) support care needs, whilst spiritual needs (49%) were less commonly identified. Dominant themes emerging as barriers to palliative care provision included: failure of identification of a child’s palliative care needs by their primary speciality, lack of current services particularly in relation to community nursing support, difficulties accessing current palliative care services (including how to refer patients and what services are available), and no identified lead clinician for palliative care. 55% of respondents commented on positive interactions with the local children’s hospice, including support for end of life care and sibling support; and the role of specialist nurses and the family support service. 88% of participants expressed a desire for a dedicated children’s palliative care service. Participants were asked to comment on the services they would expect. Eight themes were identified including, the need for on-call clinical support, coordination of services, and improvement of bereavement services.ConclusionsPaediatricians from a range of specialties lack the time and resources to provide the specialist palliative care children need. There is a significant need in Greater Glasgow for the development of a dedicated paediatric palliative care service.
AimWith continuing advancements in both antenatal and neonatal care, perinatal palliative continues to pose significant challenge. A number of professional bodies have published best practice guidance on the delivery of palliative care in the postnatal period, including BAPM (2010) and Managed Clinical Networks. An important consideration which is highlighted in all guidance is the use of end of life care plans. These are plans which combine clinical care plans with parental wishes and multidisciplinary team assessment. The aim of this audit was to assess the frequency of use of end-of-life care plans across central Scotland.MethodsA retrospective case note review of all neonatal deaths occurring after 23 weeks gestation in two large tertiary neonatal units in Scotland. A record of neonatal deaths within each unit was obtained from the electronic patient record ‘Badger’ database, between January 2014 and December 2014. A review of both the units admission databases and death certification logs were also undertaken to ensure that all deaths were captured. Full notes were requested from medical records and reviewed by the authors. All neonatal deaths following planned reorientation of care were included, acute deaths in the delivery room or neonatal unit were excluded due to their often sudden and unpredictable nature. The authors reviewed full case notes for completed or partially completed end-of-life care planning.ResultsA total of 47 deaths occurred over 2014 between both units. 60% of deaths followed planned reorientation of care. Parents were often involved in discussions regarding plans to reorientate care and parental wishes, both before and after death, were documented in 68% of case notes. The most common plans documented related to planned extubation (94%), however planning regarding analgesia (23%), feeding (4%) and bereavement care (28%) was limited.ConclusionsAt present, a large proportion of infants approaching end of life do not have a clear care plan documented. This study has identified that there remains a need for clear and concise documentation of clinical and parental wishes following reorientation of care.
AimTo determine the experience of training in paediatric palliative medicine (PPM) among trainees, to identify how well trainees were able to meet RCPCH competences in PPM, and to explore educational opportunities desired by trainees to enhance current PPM training.MethodsA semi-structured survey, containing 22 questions, was sent by email to all 4 Paediatric Training programme directors in Scotland (North, East, South East and West) for onward distribution to paediatric trainees (ST1–ST8) between October 2015 and October 2016. Questions explored PPM teaching experience, trainees confidence in achieving RCPCH palliative care competences, and identification additional training desired.Results60 (54%) recipients responded; 27 (45%) level one; 13 (22%) level two, and 20 (33%) level three. 50 (81%) respondents had undertaken all their paediatric training in Scotland. The majority of trainees had limited exposure to dedicated PPM training: 26 (42%) stated they had no training and 25 (40%) had completed 1–2 teaching sessions in PPM. Grading their ability to meetthe RCPCH palliative care competences 35 (63%) felt confident in the recognition of loss and grief and their effects 42 (70%) in understanding the need to respect the wishes of the child and family, but only 30 (50%) in their knowledge of the guidelines on withholding and withdrawing treatment and the local and national guidance on sudden infant death (SUDE). Regarding symptom management and recognition of the palliative phase of a patient journey, respondents were neutral or in disagreement that they had gained sufficient experience to be clinical competent in these fields (70% and 58% respectively). Trainees identified numerous areas in which they desired additional training: >85% on guidance around withholding and withdrawing treatment; 68% on anticipatory care planning; 67% on pain management and 55% on management of nausea and vomiting. Trainees responded positively when asked if simulation training would enhance PPM training, particularly around breaking bad news (86%), and anticipatory care planning and limitations of treatment (81%).ConclusionPaediatric trainees have limited exposure to designated PPM training in Scotland and identified that this lack of training opportunities negatively impacts on their clinical knowledge and competence. Training and education is strongly desired in a number of areas with simulation being identified as a useful method of delivering training when there is inadequate clinical exposure to PPM.
Aims: To determine paediatricians' perceptions of the palliative care needs of their patients, how well these are currently met, and to explore their experiences of current services.
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