Short Tilte:Ethical considerations in the management of individuals with severe neuromuscular disorders
Journal:Archives of Physical Medicine and Rehabilitation
Year, Volume, Issue, Page(s):94, 73, 2, 134-140
Discusses ethical issues in the management of persons with severe neuromuscular disorders. The authors suggest that, despite the many recent management advances for individuals with severe neuromuscular disease, quality of life cannot be assured by medical advances or technology. Furthermore, they contend that quality of life issues are often judged by nondisabled persons and used inappropriately to justify withholding or implementing life sustaining technologies. Although the Americans with Disabilities Act (ADA) has made important strides in preventing discrimination against people with disabilities, it does little to protect persons who are sequestered in institutions or home custodial care due to the lack of a national personal assistance services policy. The authors suggest that physical medicine and rehabilitation specialists who train their clients to take responsibility for their own care need to take a more active role in advocating for the services needed to enable them to live an independent and meaningful life in the community.