Center to Advance Palliative Care

Terry,

First, thank you for applying your heart and skills to this case.

Medical professionals often resort to a 'default' position of treatment until the ethical questions or risks overwhelmingly indicate otherwise. The 'default' however should be NOT to treat until the potential benefits of the treatment can be shown to outweigh the risks. (i.e.Non-Malfeasance trumps Beneficence)
In this case, PEG tube placements have been shown to INCREASE mortality when used in intellectually disabled patients (and increased pneumonia, vomiting, etc..).
David Strauss et al has written a couple articles about this specifically:

Strauss, D., Kastner, T., Ashwal, S., & White, J. (1997). Tubefeeding and mortality in children with severe disabilities and mental retardation. Pediatrics, 99(3), 358-362.

Strauss, D., Eyman, R. K., & Grossman, H. J. (1996). Predictors of mortality in children with severe mental retardation: The effect of placement. American Journal of Public Health, 86(10), 1422-1429.

Ultimately, it is about suffering or its absence, not just lifespan and physical comfort. Artificial nutrition cannot offer significant benefit imho, and carries the almost certain risk of increasing suffering. The patient and the team would be best served having an equally engaging and passionate interdisciplinary discussion of how best to enhance the quality of the patient's life prior to his eventual death -- not just how to stave it off for some point down the road (at any cost).

Hope that is helpful to you. May your compassion for this case bring you blessings.

Tim Ford, Palliative Chaplain
Thomas Palliative Care Center
VCU Health System, Richmond, VA