Abstract

Recent public interest in legal cases related to the withdrawal of artificial nutrition and hydration at the end of life, such as the highly publicized Terri Schiavo case (Quill, 2005), have created a climate in which a potentially life-sustaining intervention, such as gastrostomy tube (G-tube) feeding, might be questioned as futile, and even cruel, when suggested for a person with a severe disability experiencing a health crisis. Lack of understanding exists among some in the health care community and among members of the general public (including some guardians and family members) concerning the distinction between managing medical challenges associated with a chronic disability and providing care at what might be mistakenly perceived to be the end of life (King, 2005). This can have potentially devastating consequences. As suggested by Pugh (2005), the distinction between living with a disability and a terminal illness may be become ‘‘blurred’’ (p. 35), and treatment routinely provided individuals with a disability, such as Gtube feeding, might be denied as futile. The result may be an otherwise preventable death (Turnbull, 2005a).

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