Palliative care for
Tay-Sachs, Sandhoff, GM1, Canavan and related diseases
Palliative care for children aims to improve quality of life for the child as well as for the family through expert symptom management and addressing the emotional, psychological and spiritual needs of the family.
Physicians and parents are faced with difficult decisions regarding the benefits of medical technology versus the burdens of technology and its impact on quality of life. Parents and doctors must work closely together to make decision that best benefit the child while holding true to the values (link to Philosophy of Care) of the family.
Palliative care is available to children and their families from the point of diagnosis through the ups and downs of their illness experience, and through to cure or end of life care as needed. It is designed to accompany kids and families on the journey, which can sometimes feel like a roller coaster of ups and downs.
The American Academy of Pediatrics (AAP) supports an integrated model of palliative care "in which the components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death." Reserving palliative care for children who have exhausted every curative treatment and are dying would mean that many other children would miss out on the benefits that palliative care can offer. Including children who have a life-threatening illness or condition but are still be receiving curative treatment ensures that all children who can benefit from palliative care have access to it. Palliative care can be initiated or provided through hospital, physician's office practice, home health agency or hospices. It should provide a central point for care management for the child and family.