People with rare diseases have many challenges, often associated with lack of information about their rare condition among the medical professionals they encounter. There are differences in the rights of adults and the rights of the parents and children. There can be disagreements over the course of action that is in the best interest of the child.
People dealing with mitochondrial disease or osteogenesis imperfecta (brittle bone disease) are particularly at risk for misunderstandings. A child with multiple broken bones raises suspicion of child abuse. The very existence of mitochondrial disease is still controversial, and there are often no clear tests to determine the existence, nature, and extent of the condition.
Mito Action New England organized an excellent presentation to explain to parents and families the field of medical ethics, and what they need to understand in order to avoid false accusations in this area. It is important for families to create a constructive working relationships with their child’s medical team.
References are made to the case of Justina Pelletier at Children’s Hospital, a child with mitochondrial disease, and the Massachusetts Child Protection laws.
Presenters:
Jessica Shriver Hillard, medical ethicist
James Ianiri, esq., attorney, child protection
Many thanks to Julie Gortze, R.N., President, and to Mito Support of New England
http://www.mitoaction.org
