Every day in the United States and in Colombia more than 565,000 children are living with life-limiting, chronic conditions, and 5,000 of them are within the last 6 months of their lives. More than 53,000 children die in this country annually, with over 80% in hospitals.
A priority in current palliative care is enabling people to be cared for in the place of their choosing. Many hospitals provide high-quality hospice and palliative care, but enabling patients to be cared for in a home-like environment with their loved ones by their side greatly improves their quality of life.
For over 8 years I saw families admitted to the hospital just so they could rest because they were exhausted, and I witnessed last goodbyes with families huddled in hallways, sneaking siblings for sleep overs on mats on hospital floors, and kids begging to have a friend spend the night.
Totus Tuus House model for palliative care aims to reduce depression and symptom burden, both of which often contribute to morbidity in patients. One of the principles of palliative care is to help guide and support the patient’s development along the entire trajectory of their disease with a spiritual, integrative and life- promoting care model.
Totus Tuus’ program is both a philosophy and an organized method for delivering competent, compassionate, and consistent care to children with chronic, complex and life-threatening conditions.
Our care focuses on enhancing quality of life, minimizing suffering, and providing opportunities for personal and spiritual support.
This work is achieved through a combination of active and compassionate therapies intended to comfort and support our children. We offer to our children practical gestures of Christian love so that they are comforted in their pain and suffering.
It is vital to our organization's mission that we offer our children love and that we take special care to nourish their spiritual needs, so that they are fully able to endure their sufferings patiently. It is through prayer, kindness, and love that each child's spiritual needs are met; in doing so, our children are able to experience fully the love of our loving God.