This month’s Editor’s Choice from Palliative Medicine . . .
Anna Collins, Research Fellow, Palliative Care, VCCC Palliative Medicine Research Group, Department of Medicine, University of Melbourne/St Vincent’s Hospital Melbourne, Australia, explains the background to her longer article selected as ‘Editor’s Choice’ in the October 2017 issue of Palliative Medicine.
Those of us working in palliative care are well aware of the increasing body of high-quality literature from around the world, demonstrating the benefits of early integration of palliative care in advanced cancer and their families.
In Australia, our patients and their families are privileged to have good access to world-class palliative care services. Yet, we know from our own research using local statewide population data, that access and availability do not always equal early integration.
In Victoria, the second largest state of Australia, while consultation with specialist palliative care teams is a reality for approximately 60 per cent of patients with cancer, first referral is still occurring late in the illness course (median 30 days from death) for the majority.
Despite increasing evidence for palliative care, this picture appears to be one of missed opportunities – whereby any benefits likely to ensue from early engagement may be missed for a large number of these patients and their families. So why does this gap between evidence and practice exist?
I was interested to explore the views of palliative care held by patients with advanced cancer and their families. What were their initial perceptions and understandings when this concept was first raised and prior to engaging in these services? Why not request a service that has been shown to make people feel better, and also enhance the wellbeing of their families?
Studies with health professionals often report anticipated patient and family response to palliative care as a barrier to communication and referral, though few studies have actually sought patient and family views.
I interviewed 30 patients and 25 family caregivers until data saturation and conducted a phenomenological analysis of this dataset. The findings of this work portray a number of themes that present narrow or poorly understood perceptions of palliative care.
Palliative care was perceived as a system of diminished care, which was thought of as non-medically focused, non-‘expert’, basic care, providing ‘just’ pain relief or comfort. It was associated with diminished possibility, perceived as a place to wait for death, given an end to earlier hopes for survival and now expected increasing dependency on others for care.
Palliative care was also associated with diminished choice, perceived as something that is forced upon you by the health system when no other choices for care remain.
We were interested to learn from patients and carers in this study that commonly feared aspects of dying – fears such as limited choices for care, increasing dependency, and being hospitalized – have come to be associated with the care of the dying, and hence be incorporated into understandings and narratives about palliative care.
As such, this study has implications for what I see as an important task ahead for palliative care – one that requires us to bring patient and caregiver understandings in line with the evidence for what ‘good quality care’ really means in the context of serious illness.
The next steps in our research involve setting out such an endeavour to develop a systematic approach to public education, aiming to reframe underlying community narratives from those of disempowered dying to messages of choice, accomplishment and possibility.
This post relates to a longer article, ‘Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers’, by Collins A, McLachlan SA, Philip J, published in Palliative Medicine, Vol 31 (9): 825-832. Article first published online: April 3, 2017. DOI:10.1177/0269216317696420.
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