Introduction As an adult hospice in an isolated community we embarked on a project to deliver extended choices in end of life care for children and young people. Working across organisational and professional boundaries we have enabled families and children to be closer to home at the end of their lives.
Aims of the project
Respond to local need and give greater choice for families on where their child can be cared for at end of life and after death
Overcome the internal and external challenges of delivering end of life and after death care to children and young adults in an adult hospice
Approach used During 2013 we engaged in the 2020Vision project which sought to develop a range of services offering flexible, individualised end of life care and support, in the place of choice, and built around the unique needs of each family. This vision relied upon healthcare providers and other organisations to work in partnership, testing traditional professional and emotional boundaries.
We created a Memorandum of Understanding with the local NHS Healthcare Trust and in particular their Children’s Community Nursing Team allowing the hospice to be used as a location where children could receive end of life care locally and a resting service for after death care.
Results To date the service has provided support for four families, and a resting service for three children. Parents have powerfully described the relief felt when given choice on where their child can be at the time of death, and after death, stating “we could get on with dealing with our child dying, knowing we had choice.”
Conclusion This service has challenged the purpose and identity of our organisation and tested its emotional resilience. However it has shown its ability to be innovative and responsiveness to local needs.
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