Refusing Life-Sustaining Treatment Is Not Disability Discrimination

With new federal regulations and an en banc ruling from the U.S. Court of Appeals for the Fifth Circuit, U.S. clinicians and hospitals using their NBT/PIT policies must be careful to avoid violating federal laws that prohibit discrimination based on disability. One model might be a 2025 ruling from the Czech Constitutional Court.    

The minor patient had epidermolysis bullosa, a severe condition known as ‘butterfly skin disease’. The parents had sought damages and a written apology from a hospital, alleging that the hospital discriminated against their daughter on the basis of her health condition by refusing to transfer her to intensive care despite her deteriorating state, thereby denying her a chance of life-saving treatment.

The lowers courts held that the parents failed to show that the hospital treated the child differently The refusal to provide further medical treatment to a patient in a terminal phase, where such treatment is no longer medically indicated and would only briefly delay an inevitable death, does not violate the principle of equal treatment or the right to protection against disability discrimination.

The Constitutional Court confirmed that the concept of ‘medical futility’ is constitutionally permissible when properly applied and established a two-part test: 

1. Medical assessment - examines whether the indication of futile treatment was made in accordance with professional standards 
2. Procedural assessment - examines whether clinicians followed legally approved procedures when deciding not to provide further treatment, including adequate consultation with the patient’s family.