By: Fiza Nadeem
Palliative Care and Epilepsy
What is palliative care and hospice care?
Palliative care is a type of care which aims to improve the quality of life for those with illnesses at any stage and of any age. Palliative care provides support for the family and patient during and after illness. It consists of a combination of interdisciplinary teams who work together to provide the best quality care that improves the patient’s life. The main difference between palliative care and care in hospitals is that it does not aim to cure the illness. As a result, palliative care exists in the form of end of life care, advanced care planning, and bereavement support (National Institute of Aging, 2021).
Similarly, there is also hospice care which has the aim of providing quality of life, care, and comfort to a person with an illness who is reaching the end of their life (National Institute of Aging, 2021). When there is no possible treatment for a serious illness, hospice care is provided in that situation. It is usually when a patient is at the terminal stage of illness where they have a limited amount of time to live (National Institute of Aging, 2021).
Epilepsy and Palliative Care
Epilepsy is a neurological disorder characterized by seizures which can range in severity and impact (Kluger et al., 2021). However, we are leading towards the awareness that Epilepsy has cognitive, psychological, neurobiological, and social factors that contribute to a person’s life and the quality of life (Kluger et al., 2021). Due to these factors, there is recognition that people with epilepsy need more than just managing their seizures. Research has demonstrated that epilepsy has cognitive dysfunctions, mood disturbances, and psychological stressors which all contribute to the overall well-being of a person with epilepsy (Kluger et al., 2021).
So, what does palliative care have to do with epilepsy?
Palliative care is proposed to address the underlying gaps which people with neurological illnesses face. It includes improving psychological issues, management of complex symptoms, spiritual well-being, advanced care planning, and end of life care (Kluger et al., 2021). However, the barrier is that the field of palliative care, medicine, epilepsy, and neuropalliative care have not focused on merging the principles of palliative care within epilepsy (Kluger et al., 2021). Kulger et al. (2021), believes that the reason we do not have a focus on implementing palliative care within epilepsy is related to misperceptions that epileptologists have which is what palliative care can offer patients. Within the palliative care community, there are misperceptions on the impact of intractable seizures and epilepsy.
The good news is, there is an emerging field of neuropalliative care and it is relevant to epilepsy because it identifies the needs of patients, families, trains neurologists in palliative care skills, develops approaches and therapeutic strategies to manage complex symptoms, psychological issues, and advanced care planning (Kluger et al., 2021). This approach ensures that individuals who suffer with epilepsy receive comprehensive care which are tailored to their medical needs, but also their emotional and psychological well-being.
Conclusion
In conclusion, integrating palliative care into managing patients with epilepsy is beneficial because it can address psychological, social, and cognitive challenges that these individuals face on a daily basis. Palliative care emphasizes the needs for patients support and provides education to healthcare providers on reinforcing practices which help meet these needs. Overcoming misconceptions is crucial in ensuring that comprehensive care is successfully integrated for patients suffering with epilepsy.
Resources
Hospice Foundation of America is a non-profit which aims to enhance the role of hospice by providing leadership in terms of the development and application of hospice (Hospice Foundation of America). It also focuses on its philosophy of care with the goal of improving the United States (Hospice Foundation of America).
Canadian Virtual Hospice is a division of the International Centre for Dignity and Palliative care Inc. which is a registered charity (Canadian Virtual Hospice). It consists of resources on palliative care that provides information on loss, grief, and palliative care (Canadian Virtual Hospice).
Epilepsy Foundation focuses on improving the life of individuals suffering from epilepsy through research, education, advocacy, and connection (Epilepsy Foundation). The foundation has helped to provide funding for research, training specialists, educating the general public regarding seizure first aid and epilepsy (Epilepsy Foundation).
Arthur Rank Hospice is a foundation that provides its support to patients living in Cambridgeshire (Arthur Rank Hospice Charity). It provides care for those with a life limiting condition, serious illness, or in need of end of life care (Arthur Rank Hospice Charity).
References
Arthur Rank Hospice Charity (2022). About Us. Arthur Rank Hospice Charity. Retrieved from: https://www.arhc.org.uk/about-us
Canadian Virtual Hospice (2025). About Us. Canadian Virtual Hospice. Retrieved from: https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home+Navigation/Abo ut+Us.aspx
Epilepsy Foundation (2024). About Us. Epilepsy Foundation. Retrieved from: https://www.epilepsy.com/
Hospice Foundation of America (2025). About Us. Hospice Foundation of America. Retrieved from: https://hospicefoundation.org/about-us/
Kluger, B. M., Drees, C., Wodushek, T. R., Frey, L., Strom, L., Brown, M.-G., Bainbridge, J. L., Fischer, S. N., Shrestha, A., & Spitz, M. (2021). Would people living with epilepsy benefit from palliative care? Epilepsy & Behavior, 114(Pt A), 107618–107618. https://doi.org/10.1016/j.yebeh.2020.107618
National Institute of Aging. (2021). What are palliative and hospice care? https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-a nd-hospice-care
