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Helen walsh,E Molloy
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Ir Med J. 2013 Feb;106(2):60-1
Sir
Neonates and infants have the highest death rates in the paediatric population and approximately 53% of deaths are from life-limiting conditions which occur in 1st week of life1. Approximately 98% neonatal deaths occur in hospital setting with most a result of lethal anomaly, prematurity or birth related incidents.2
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Palliative care (PC) for children is an active and total approach to care, embracing physical, emotional, social & spiritual elements, which focuses on enhancement of quality of life for the child and support for the family. It encompasses management of distressing symptoms and provision of respite and care through death and bereavement, caring for the living infant, after death care, parental and carer support. PC needs assessment for children 20051,4 proposed that children’s hospices have a role in the provision of both specialist paediatric palliative care and respite. Also suggested was that there was a substantial need for ongoing education and training of healthcare professionals. The Primary Care Strategy3 suggested the development of Multidisciplinary teams led by GPs in adult palliative care. They also recommended the development of community paediatric and children’s nursing posts to support community-based care. Home is the preferred location for the dying child and bereavement services need to be more structured in order to provide 24-hour support. The initial step to facilitate a supportive pathway for babies & their families would be to establish a co-coordinated, holistic family centred care approach to PC and to provide guidance for nurses and medical staff.
We surveyed neonatal palliative care practice in Ireland by surveying neonatal intensive care units (n=20) and both paediatric intensive care units caring for neonates and received 18 responses. Only 1 unit had a palliative care guideline, but 2 units had guidelines in development. The majority of units reported inadequate facilities and most of the end of life care were delivered in the ICU rather than a dedicated family room. Six units had a side room for families but noted that this room was often used for storage due to limited space. The majority of care was provided by neonatal nurses, neonatologists, chaplains and social workers. Only 3 units reported that they had a bereavement officer available. There was no in-house teaching and little bereavement support. Morphine was the medication of choice for symptom-relief in 12 units however 9 units surveyed use paracetamol only. Only 2 units had formal family bereavement followup. All respondents felt that a dedicated PC team essential with 12 suggesting that a paediatric palliative care was essential in collaboration with paediatric palliative care consultant.
In Ireland the delivery of adequate support during neonatal palliative care is challenging due to a paucity of specialised paediatric care in palliation, prescribing issues and support for parents is often dependent on geography. Palliative care protocols are important to provide support with end of life decision-making, bereavement and pain management. There is an urgent need for appropriate guidelines, specialist paediatric palliative care posts, improved community support and the establishment of continuing education.
H Walsh, E Molloy
Department of Neonatology, National Maternity Hospital, Holles St, Dublin 2
Email: [email protected]
References
1. ACT (2009) A Palliative Pathway for babies with Palliative Care Needs, 1st Edition, Written by Katrina McNamara-Goodger, Bristol, ACT Available from: http://www.act.org.uk/
2. Department of Health and Children (2001) Report of the National Advisory Committee on Palliative Care. Dublin: Stationery Office
3. Department of Health and Children (2001) Primary care: A new direction, Quality and Fairness: A Health System for You, Stationary Office, Dublin.
4. Department of Health and Children & Irish Hospice Foundation (2005) Palliative care needs assessment for children 2005. Dublin Stationery Office
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Author's Correspondence
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No Author Comments
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Acknowledgement
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No Acknowledgement
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Other References
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No Other References
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