Limitations in the approach health caregivers can take in end-of-life care decisions

In the terminal stages of neuro-metabolic diseases, parents can begin to experience a sense of loss even before the child dies, and might accept death prematurely.

A 2.5-year-old female patient with Sandoff Disease (diagnosed at 9 months of age), and a 17-month-old male Krabbe patient (diagnosed at 5 months of age) were admitted to the hospital with hypernatraemic dehydration and bronchopneumonia, respectively, within 10 days of each other. Both patients developed respiratory arrest short after admission and were supported with mechanical ventilation. Both families gave written consent to end life support, but their wishes could not be accepted according to Turkish law.

Specialists are expected to communicate well with families and give continuous care while respecting the opinions of patients' families on the timing of the withdrawal of life support. However, ethical and legal regulations on the conduct of health care professionals in these circumstances are unclear in Turkey and should be developed rapidly.