For professionals

Introduction

Patients with long-term disorders of consciousness (LBS) are a relatively small group with very severe limitations. From one day to the next, the life that the patient led has changed dramatically. The impact of LBS on those close to them is enormous. They live for a long time between hope and fear. The demand for care and the decision-making processes are very complex. The statement 'This is a fate worse than death, but we don't want to lose it' aptly expresses the heartbreaking dilemma for the loved ones (Lavrijsen, 2005a). Due to medical treatment in the acute phase and modern technology, these patients have remained alive. This means that there is a collective responsibility for optimal care and treatment, especially
after the acute phase. Patients with LBS and their loved ones must be able to count on appropriate care.