Accessing palliative care for multiple sclerosis: A qualitative study of a neglected neurological disease

Abstract

Background Despite the global consensus on the importance of palliative care for patients with multiple sclerosis (MS), many patients in developing countries do not receive palliative care. Improving access to palliative care for MS requires a contextual understanding of how palliative care is perceived by patients and health professionals, the existing care pathways, and barriers to the provision of palliative care.

Objective This study aims to examine and contrast the perceptions of MS patients, neurologists, and palliative care physicians towards providing palliative care for patients with MS in Malaysia.

Methods 12 MS patients, 5 neurologists, and 5 palliative care physicians participated in this qualitative study. Each participant took part in a semi-structured interview. The interviews were transcribed verbatim, and analysed using an iterative thematic analysis approach.

Results Patients and neurologists mostly associated palliative care with the end-of-life and struggled to understand the need for palliative care in MS. Another barrier was the lack of understanding about the palliative care needs of MS patients. Palliative care physicians also identified the scarcity of resources and their lack of experience with MS as barriers. The current referral-based care pathway itself was found to be a barrier to the provision of palliative care.

Conclusions MS patients in Malaysia face several barriers in accessing palliative care. Overcoming these barriers will require improving the shared understanding of palliative care and its role in MS. The existing care pathway also needs to be reformed to ensure that it improves access to palliative care for MS patients.