Hospice care for
Tay-Sachs, Sandhoff, GM1, Canavan and related diseases
The focus of Hospice care is on comfort and quality of life. It is intended primarily for children who are not pursing cure-directed therapies. This care may be provided for months and even years prior to the children's death. Hospice care may become an important choice in the care of some children.
Hospice includes attention to the physical, emotional, psychological, spiritual, and social needs of the child and his/herfamily. Hospice caregivers have expertise in pain and symptom management and emotional care, as well as family support during this difficult time. Hospice care can often help families who wish for care to be delivered outside the hospital setting.
Hospice can simplify and coordinate your child's care allowing you and your family more quality time to enjoy being together.
Hospice nursing can:
- Call the doctor as needed
- Order and arrange home delivery of medications, formula, diapers, medical equipment and other supplies
- Answer questions 24/7
- Act as physicians eyes and ears in the home to maximize symptom management and limit hospitalizations and MD office visits
- Provide education to parents and other families members as to what to expect at every stage of the disease process
- Assist MD in provide education to parents and other family members on choices and options during each episode of care
Hospice is usually provided in the home but some agencies have the option of an inpatient care facility.