'No one told me he was dying': end of life care in the acute hospital environment, family member's perspectives.

Abstract

Background: This research explores family members’ experience of the end-of-life care (EoLC) that their loved one received at Ballarat Health Services (BHS). Participants’ were asked to describe the EoLC their relative received, including information given about the dying process by health care professionals (HCP). Aim: The intent of the research was to explore the meaning of end of life care for family members. It is anticipated this research will inform the End-of-Life framework for BHS, in Victoria Australia. Methods: A qualitative interpretative design was adopted and data was collected via semi-structured open-ended individual interviews. Interviews were audio recorded, transcribed and analysed to identify common themes. Results: Thirteen participants shared their thoughts and memories of the death of their loved one, and five key themes emerged: •Communication •Preparation for death •Follow up after death •The care experience •The dying experience. Discussion: Health care professionals are positioned to play an integral role in supporting the person who is dying and also their family during EoLC. This care is a vital focus for HCP in the last days and hours of the person dying and their family. It is essential that HCPs in all settings are equipped to provide the highest possible standard of EoLC. Conclusion: This research will inform the EoL framework being developed to integrate the elements of: Advance Care Planning, a tool to help HCPs identify patients who are dying, medical goals of care documentation, a Care of the Dying Management Plan and a range of other supporting tools and documents.