Facing the end of life is difficult for most people, including many health care providers. Even in the general population, most people do not have advance directives, have not appointed health care agents to speak for them when they lose the capacity to speak for themselves, and die in hospitals or nursing homes when they would prefer to die in their own homes. If they arrive at hospice care, their stay usually averages weeks, instead of the 6 months available to them under Medicare benefits, for example.

So it is not difficult to imagine the plight of those with intellectual and developmental disabilities who may be unable to make their wishes known regarding end-of-life treatments or who may be excluded from discussions about their terminal illness and the options available to them because (a) they are thought to be unable to express...

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