Palliative care is an approach to the care of persons living with serious illnesses that focuses on improving quality of life and reducing suffering through a whole person approach. Neuropalliative care is an emerging field of medicine dedicated to improving the quality of care for people living with neurological disorders and their families using a palliative care framework. The emergence of this field reflects three important observations:
The overarching purpose of the International Neuropalliative Care Society (INPCS) is to foster the growth of this field by creating a community. Activities of INPCS will include building professional networks, supporting research, developing educational materials and opportunities, creating guidelines for clinical practice, and advocacy.
There is currently no other society dedicated to promoting this field in its full extent. INPCS differs from special interest groups within other societies in being solely focused on the promotion of neuropalliative care. Our society recognizes that the optimal growth of this field will be interdisciplinary (no other society embraces the full spectrum of disciplines involved in neuropalliative care); international (no other society embraces the concept that we need to learn from different models of care); person-centered (no other society invites persons living with these disorders and their families to have an equal seat at the table); and equally embracing of specialty and primary neuropalliative care (no other society is working on promoting both primary and specialty neuropalliative care models of care and integration into education across disciplines).
Palliative care is an approach that improves the quality of life of people who are facing serious illness and their care partners. It prevents and relieves suffering through the identification, assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.
Many neurologic diseases are progressive (worsen over time) and incurable. They are associated with a number of physical symptoms, such as pain or constipation, and mood symptoms like depression or anxiety. People living with these illnesses may experience loss of their physical and mental capabilities, which leads to increased dependence on others for day-to-day activities. The changes associated with neurologic diseases can lead to distress for people living with these illnesses and their caregivers. The role of palliative care is to provide expertise in symptom management, to provide support for those living with illness and their care partners, to assist in determining an individual’s values and preferences in regards to their medical care, and to align care with these identified values and preferences.
Palliative care is appropriate at any age and any stage of serious illness. It focuses on symptom management, support for people navigating serious illness, and eliciting a person’s values and preferences about their medical care. It can be provided alongside curative treatments and clinical trials.
Like palliative care, hospice focuses on symptom management and support for people living with serious illness and their caregivers. Hospice is a type of care provided to people who are thought to be in the final stage of illness and approaching the end of life. Specific hospice eligibility criteria may differ somewhat from country to country.
However, hospice generally is considered when a person meets specific criteria indicating a limited prognosis and also has chosen to focus on comfort and symptom management, as opposed to curative or life-prolonging treatment for their disease.
Reference: Definition adapted from WHO: https://www.who.int/news-room/fact-sheets/detail/palliative-care, Accessed October 9, 2021