Ethical considerations in the management of individuals with severe neuromuscular disorders.

摘要: There have been many recent advances in improving the quality of life and prolonging for individuals with advanced neuromuscular disease. These include use physical medicine techniques to balance extremity muscle strength improve range motion noninvasive provide inspiratory expiratory assistance prolong without resort tracheostomy. Such help eliminate «crisis» decision making about «going on a respirator» sophisticated assistive equipment robotic aids. Physicians society general issues inappropriately derived by questioning physically able justify withholding or implementing life-sustaining therapeutic interventions these individuals. Informed decisions ethically financially complex matters such as long-term ventilator should be made examining satisfaction competent who already chosen options. The great majority severely disabled ventilator-assisted disease are satisfied their lives despite inability achieve «usual» goals associated population. Their principle derives from social relationships, reorganization immediate environment. Although Americans Disabilities Act is seen an important step prevent discrimination against individuals, it does little nothing self-directed individual not informed his/her physicians regarding potentially vital options nor those warehoused institutions because lack national personal services policy. This ironic provision home care can greatly reduce cost well enhance life. institutional control chronic care, whether institution itself, community managed nursing organizations rather than client himself, impersonalizes dehumanizes name safety. It reduces client's sense self-efficacy suggests inadequacy coping except most restrictive Physical rehabilitation specialists train patients how manage take responsibility need play more active role advocating procurement needed permit them return