Child vs Family

My supervisor and I were discussing about one of our paediatric clients who was bed-ridden, severely contracted and cachexic due to her congenital degenerative condition. As a PT, we do our best to provide the best services for our clients. We act prophylactically to prevent deterioration of the musculoskeletal system eg contractures, scoliosis, deformities etc. We provide advice to the parents and explain the best options for their child. We provide referral to orthotics, orthopaedics, OT etc to ensure their best comfort.

During the discussion, my supervisor said she’d given all the options, and had done all she could within the limits of her profession and duty of care for the best of the client. Nonetheless, the parents chose not to have any wheelchair adjustments, not to take the child to school, and not to have any surgery done on their child. Their rationale was that their child is not going to live very long, so there was no reason for her to go through the ordeal of having a surgery or getting expensive equipment. Despite that, they would do stretches and passive movements regularly, and ensure their child receive love and care from them.

That made me realise that what I (from a physiotherapist point of view) think is best for the child, may not necessarily be so. It is about what the family desires, and what the family thinks is best since they are the child’s primary care-givers. It is vital that I take into consideration the family’s needs and concerns, and be able to adjust my intervention and goals accordingly in order to obtain their trust and co-operation. After all, it is a family-centred practice.