Background

Advance care directives (ACD) are formal documents that state patient values and preferences for end of life (EOL) care. ACDs vary but are generally agreed that they can be a valuable tool to decrease family and patient distress, improving communication at EOL. A small study was undertaken to better understand families experience of the use of ACDs to guide EOL care in a regional NSW inpatient palliative care setting. 

 

Aim 

Understand the bereaved family’s experiences of the use of ACDs when guiding care for a dying person in hospital. This includes determining if the ACD was used in decision making, understanding if satisfaction with end-of-life care was associated with ACD use, and identifying any improvements that may be made to make ACDs more visible in an inpatient setting.

 

Methods 

Qualitative methodology was used. Purposeful sampling identified families who had experienced bereavement between April 2019 and January 2020. Inclusion criteria - the person dying in hospital in regional NSW, completion of an ACD prior to hospitalisation, and registration with a community palliative care service. Face to face interviews were recorded and analysed using inductive thematic analysis. 

 

Findings

Eleven families met the inclusion criteria, and six agreed to be interviewed. 

Families

-       Did not see that ACDs were used in hospital to guide EOL care, but care provided met expectations. 

-       Felt ACDs were useful when planning care and preparing for dying.

-       Valued support from staff to complete ACDs, but wished it was discussed during admission.

 

Conclusions 

ACDs are not perceived by families to be used to guide EOL care in hospital. Families felt satisfaction with care provided, despite ACDs not being reviewed during admission. This may be because discussing dying when completing ACDs provided families with opportunities to prepare emotionally and practically for their loved one dying.