Challenges facing palliative neurology practice: A qualitative analysis

• Published in: Journal of the neurological sciences 2018-02, Vol.385, p.225-231
• Main Authors: Gofton, T.E., Chum, M., Schulz, V., Gofton, B.T., Sarpal, A., Watling, C.
• Format: Article
• Language: English
• Subjects: Canada; Caregivers - psychology; Clinical neurology; Delivery of Health Care; End of life; Female; Humans; Male; Medical education; Nervous System Diseases - psychology; Nervous System Diseases - therapy; Neurologists - psychology; Neurology - education; Neurology - methods; Palliative care; Palliative Care - methods; Palliative neurology; Prognosis; Retrospective Studies
• ISSN: 0022-510X; 1878-5883
• DOI: 10.1016/j.jns.2017.12.008

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. 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. 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. 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. •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.