Article Text

Download PDFPDF

151 Every breath you take: tracheostomy ventilation in children’s palliative care
  1. Elli Rushton and
  2. Christine Greenfield
  1. Wessex Childrens Hospice Trust


Background Children’s palliative care is changing. Medical and technological advances enable an increasing number of children with life limiting conditions to survive on long term ventilation (LTV) via tracheostomy. A specialist hospital identified that children spend months in hospital awaiting adaptations to accommodation, and establishment of a care package.


  • Set up a unit for tracheostomy ventilated children within a Children’s Hospice in partnership with the hospital. This unit would provide accommodation and nursing support for 3 children and families in preparation for discharge home.

  • Facilitate care of child outside the hospital environment.

Methods October 2016-March 2017:

  • Literature review

  • Partnership working with respiratory team

  • Agreed practice framework

March 2017–October 2017:

  • Collaboration with specialist paediatric respiratory, and hospice palliative care teams

  • Workforce planning

  • Development of clinical pathways, policies and standard operating procedures; clinical governance

  • Practice Education team develop LTV Study day and Competency Framework, ongoing review of clinical knowledge and skills

  • Preparation of children and families for transfer from High Dependency Unit to hospice.


  • November 2017: Admission of first tracheostomy and ventilated child and family from HDU to unit

  • Child resident for 6 months, successful weaning off day time ventilation

  • July 2018 : Admission of second tracheostomy ventilated child from HDU to unit

  • Child resident 4 months, discharged on weaning programme

  • No complications or significant infections acquired by either child

  • Saved hospital bed days: 308

  • Staff competency increased from 47% to 93.5%

  • Maintained good relationship with families.

Conclusion With robust education and governance, tracheostomy ventilated children can be safely cared for in a hospice environment. Both sets of parents reported the environment had a positive impact on family dynamics and improved children’s physical health and emotional well-being.

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.