Developing a meta-understanding of ‘human aspects’ of providing palliative care

Abstract

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.

Palliative Care: A Primary Care Pharmacist Perspective

“…In agreement with the Gold Standard Framework guidance, patients in the UK are added onto the GPs palliative register when they are believed to be in their last 12 months of life [ 6 ]. These patients have acknowledged needs at the different stages of their palliative journey [ 7 , 8 ]. For instance, an average cancer patient may contact their GP at least 43 times in their last year of life.…”

“…Arguably, patients’ perceptions of their treatment change throughout the illness, even reaching a point when less importance is placed on the tablets or on their medical care. Healthcare professionals refer to this as “transition”, which often coincides with the acceptance of illness and the associated life expectancy [ 8 , 9 , 10 , 11 ].…”