ABSTRACT

Inaccurate diagnosis is an ethical problem leading to biases in prognostic information and treatment strategies which in turn may lead to inappropriate decisions of withdrawal or withholding vital life-sustaining treatments. In the acute stage following brain insult, patients with Locked-In Syndrome (LIS) can be confronted with end-of-life decisions, and decisions around accepting or declining life-sustaining treatments such as artificial nutrition and artificial ventilation. These end-of-life decisions raise significant ethical issues. Their attitudes may be influenced by the treating physician and family members' opinions. Working with patients in LIS can give rise to many ethical challenges and healthcare professionals need to be prepared to deal with challenges. Ethical decisions need to be made in light of morbidity and survival literature and the medical and rehabilitation advances enabling patients with LIS to be able to live a fulfilled life. Treating physicians need to challenge their own perceptions, beliefs and often distress in dealing with the ethical dilemmas that arise.