The Lilac House will be a large residential hospice home which offers both hospice care to Maine children under 21, as well as respite services to children with life-limiting conditions.
Children with life-limiting illness can require 24 hour care, often performed by a blend of direct care providers or family members and various medical providers. Because of their specialized needs for care there is not currently a viable option to provide direct caregivers with assistance out of home or with a temporary reprieve. The Lilac House will provide respite services to families for up to a total of two weeks per year. Adjoining family suites will allow families to initially stay overnight with their child if they choose. Under this model, staff members are able to train and educate direct caregivers on best care practices. Parents are not required to accompany their child during respite care and are encouraged once they feel comfortable to take the time away for themselves and to recover their energy.
Children and young adults who have a terminal diagnosis and have entered into hospice care currently have three options in Maine:
1) Find an Adult Hospice Center which acceptances children
2) Remain at the hospital, often in the ICU or;
3) Seek In-home hospice services.
The Lilac House will offer a fourth option designed specifically to meet the needs of children. With no out-of-pocket cost to the family, Children will be given their own private room and receive medically necessary care through their final days. The entire house, and its staff, are there to make those moments of transition as comfortable as possible and to provide the necessary support services.
Through a needs assessment it was determined that the Lilac House will have 20% of its beds designated for Hospice, and 80% for respite care. All Hospice rooms will have adjoining suites as well as half of the respite care rooms.