Background Palliative care starts at diagnosis and the focus throughout should be on quality and supporting families to have the best life experience possible (Department of Health, 2008). It is recommended that holistic assessment and thorough advanced parallel planning for each eventuality can help to give the family back some control and reduce some of the anxieties involved in end of life care (Bennett & Ilic, 2011), however, this takes time and can be easier in familiar surroundings.
Aim To extend our current hospice at home service (which is currently focused on immediate end of life care) to offer short respite visits in the family home, earlier on in a child’s condition. By visiting regularly we hope to offer ongoing support and improve outcomes for children and their families.
Methods November 2017 to January 2018: Establish criteria for admission and service delivery model. Identify families who would benefit from respite at home and that fit the criteria. January to April: Recruit staff to the team and establish paperwork to assist in the running of the service. April to June: Contact families and start to offer home visits, complete Family Agreements, Passports, risk assessments, medication charts and Allocation Tool for each family. June to September: Complete individual advance care plans in liaison with multidisciplinary team. Audit the service and gather user feedback.
Increasing visits to families and positive user feedback
Increasing referrals to in–house hospice services
Increasing numbers of completed advance care plans
Increasing use of the resting (cold) rooms in the hospice
Reducing numbers of ‘unexpected’ deaths and thus the need for transfer to hospital or coroner’s mortuary after death.
Conclusion Respite care provided by the hospice at home team would benefit the children and families in the here and now, but it could also have a huge impact on the parent, sibling and family’s emotional health and well-being in the future.