Background Literature reports that healthcare staff wait for patients and their family network to raise questions about whether or how to talk to children and young people (< 24 years, hereafter referred to as children) about a loved one’s illness and impending death. Patients and families wait for staff to raise the subject. Research indicates families and healthcare staff find these conversations difficult.
Aim To survey palliative care practice in an NHS hospice.
Methods Data was captured from a random sample of 30 patient records.
Results Participants ranged from 27 – 97 years, 30% female. Patients were known to the service for 4 to 534 days, 58% were receiving ongoing palliative care at the time of the survey.
Information about the patient’s relationships with children was documented in 10 (30%) records; at first meeting in 4 and at subsequent contacts in six.
Palliative Care Key Information form was completed for 36% (11/30) of patients. ‘Significant relationships’ were completed on 8 forms, however, only 3 records referred to children.
Documented relationships with children included parent, grandparent and great-grandparent.
Two families raised concerns about talking to children with staff. In one case there was no evidence that concerns were addressed, in the second the issues were managed by a consultant in palliative medicine and followed up during the hospice admission.
There was no documented evidence that members of staff offered to speak with children. A children’s bereavement charity was reported as supporting one family, whilst another family’s children received support at school and from a counselling service.
Conclusion Important conversations with children are not being included as part of routine clinical care. The results of this survey and the literature about the impact of timely information for children when an important adult is receiving palliative care, will be shared across our service. These discussions will inform an action plan to facilitate family-focused conversations.
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