Persons Living with Serious Illness, Family, Care Partners, Advocates

 

The goal of these pages is to provide those living with serious neurological illnesses and the people who support them with resources to help navigate health care decisions, plan for the future, and find support.

The content on these pages is generally divided by geographic region and specific illness. However, some resources can be applied to a person’s care regardless of their location or specific diagnosis.

As a new society, we are continually adding additional resources. If you have resources that you would like included on this list, please email info@inpcs.org.


What is palliative care?

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.[1]

Why is palliative care important in neurologic disease?

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.

What is the difference between palliative care and hospice?

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: [1]Definition adapted from WHO: https://www.who.int/news-room/fact-sheets/detail/palliative-care, Accessed October 9, 2021