Highlights
- •Palliative neurology has variability, communication barriers, threats to personhood.
- •Palliative neurology challenges: uncertainty, inconsistency, existential distress
- •Barriers may be overcome by further research and training in palliative neurology.
Abstract
Purpose
This study aimed to develop a conceptual understanding of the specific characteristics
of palliative care in neurology and the challenges of providing palliative care in
the setting of neurological illness.
Method
The study was conducted at London Health Sciences Centre in Canada using grounded
theory methodology. Qualitative thematic analysis was applied to focus group (health
care providers physicians, nursing, allied health, trainees) and semi-structured interview
(patient-caregiver dyads) data to explore challenges facing the delivery of palliative
care in neurology.
Results
Specific characteristics of neurological disease that affect palliative care in neurology
were identified: 1) timelines of disease progression, 2) barriers to communication arising from neurologic disease, 3) variability across disease progression, and 4) threat to personhood arising from functional and cognitive impairments related to neurologic disease.
Moreover, three key challenges that shaped and complicated palliative care in neurology
were identified: 1) uncertainty with respect to prognosis, support availability and disease trajectory, 2) inconsistency in information, attitudes and skills among care providers, care teams, caregivers
and families, and 3) existential distress specific to neurological disease, including emotional, psychological and spiritual
distress resulting from loss of function, autonomy and death. These challenges were
experienced across groups, but manifested themselves in different ways for each group.
Conclusions
Further research regarding prognosis, improved identification of patients with palliative
care needs, developing an approach to palliative care delivery within neurology and
the creation of more robust educational resources for teaching palliative neurology
are expected to improve neurologists' comfort with palliative care, thereby enhancing
care delivery in neurology.
Keywords
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Article info
Publication history
Published online: December 07, 2017
Accepted:
December 6,
2017
Received in revised form:
November 14,
2017
Received:
March 6,
2017
Identification
Copyright
© 2017 Elsevier B.V. All rights reserved.
