Patients’, caregivers’ and clinicians’ understandings of an advance care planning process: The example of ambulance palliative care plans

Abstract

Background: With the introduction of New South Wales Ambulance Authorised Palliative Care Plans within a metropolitan palliative care service, the perspectives of patients, caregivers and clinicians and their understandings of the processes involved in completing the Plans were investigated. Methods: This qualitative sub-study used semi-structured interviews. Nineteen patients and caregivers who had received an Ambulance Palliative Care Plan and 10 clinicians who completed the Plans were interviewed (n=4) or participated in a focus group (n=6). Grounded theory provided theoretical and procedural direction. Thematic content analysis utilized the constant comparative method. Results: Thematic analysis of patient/caregiver interviews revealed four major themes (I) a lack of involvement in signing the Plan; (II) a need for clear communication about the Plan; (III) trust in the handing over of difficult decisions to family; and (IV) control over where to receive end of life care. Patients indicated that they had little understanding or memory of what the document was or of its purpose, and there were some significant caregiver anxieties about the Plans. Those who were clear on the rationale for the Ambulance Palliative Care Plan demonstrated more prognostic awareness about their condition and the benefits or burdens of resuscitation and treatment. Clinicians identified the main benefit as avoidance of Emergency Department (ED) admission and for patients to be able to choose their preferred place of death. Barriers were mainly systemic and included a lack of clarity around the signature processes and the early implementation of the Plan where the palliative care service was new to patients and families. Conclusions: The Ambulance Palliative Care Plans are a complex intervention that are sometimes misunderstood by patients, particularly those who are very unwell or who have little prognostic awareness. Clinicians perceive the major benefit to be avoidance of admission to the emergency department.