Developing a meta-understanding of 'human aspects' of providing palliative care.

Objectives: Our intention was to develop a meta-understanding of the 'human aspects' of providing palliative care. Integral to developing this meta-understanding was recognising the individuality of people, their varied involvements, situations, understandings, and responses, and the difficulty in stepping back to get a whole view of this while being in the midst of providing palliative care. We intended for this meta-understanding to inform reflections and sense-making conversations related to people's changing situations and diverse needs. Methods: Using collaborative inquiry, this qualitative research was undertaken 'with' clinicians rather than 'on' them. Our team (n = 7) was composed of palliative care clinicians and researchers from a co-located rural health service and university. We explored our personal perceptions and experiences through a series of 12 meetings over 8 months. In addition, through five focus groups, we acccessed perceptions and experiences of 13 purposively sampled participants with a range of roles as carers and/or healthcare providers. Data were dialogically and iteratively interpreted. Findings: Our meta-understanding of 'human aspects' of providing palliative care, represented diagrammatically in a model, is composed of ATTRIBUTES OF HUMANITY and ACTIONS OF CARING. ATTRIBUTES OF HUMANITY are death's inevitability, suffering's variability, compassion's dynamic nature, and hope's precariousness. ACTIONS OF CARING include recognising and responding, aligning expectations, valuing relationships, and using resources wisely. The meta-understanding is a framework to keep multiple complex concepts 'in view' as they interrelate with each other. Significance of findings: Our meta-understanding, highlighting 'human aspects' of providing palliative care, has scope to embrace complexity, uncertainty, and the interrelatedness of people in the midst of resourcing, requiring, and engaging in palliative care. Questions are posed for this purpose. The non-linear diagrammatic representation of ATTRIBUTES OF HUMANITY and ACTIONS OF CARING facilitates multiple ways of engaging and revisiting palliative care situations or navigating changes within and across them.

When death is imminent - documenting end-of-life decisions.

BACKGROUND: There has been widespread promotion of advance care planning in recent years, which is consistent with an ageing population and a greater awareness of patient self determination. METHODS: A review of medical records relating to hospital patient deaths and a separate review of emergency department admissions of patients aged 75 years or more in the same hospital. RESULTS: In the patient deaths sample, 77% of patients (median age 79 years), had their first documented end-of-life discussion 3 days before death. In the sample of emergency department admissions, 82% of patients (median age 83 years), had no documented end-of-life discussion or review by the time of discharge. Only two patients, both in the emergency department admissions group, had written advance care plans before admission. DISCUSSION: This study suggests that documented advance care plans are either not being prepared in the community or are not being communicated to acute care facilities. As a result, end-of-life care preferences are documented when death is imminent.