Reply #39: I have been a long-term care nurse

[ismnotwasm]

I believe that the patients wishes should be followed to the greatest extent possible, barring that, the legal guardian. That said, I hate to see the disabled denied care or marginalized any more than they already are. BUT my experience with completely disabled people on tube-feedings is that eventually they begin to experience any number of other health care problems, including pneumonia's, infections. If there is no weight bearing, they develop osteoporosis, and are prone to fractures. The atrophied muscles develop painful contractures, the skin if not cared for properly develops pressure sores--especially if incontinent. If a urinary catheter is in place, then it is one infection after another. So the actual food issue, the tube feeding is only one consideration of care, remember, she also gets all her water from the tube-feeding also. I have had tube feeders complain to me of thirst. Oral care is extremely important if they start the cycle of infections and antibiotics, they develop yeasts in the mouth and other places as well as fungus. The most important thing for these folks is good family support and proper medical and nursing care. I believe she is in a nursing home?--I'm not sure of my facts here, but if she is, I can tell you that nursing homes across the nation are scrambling for dollars and staff. Care is often inadequate. No easy answers here. I wish everyone in the nation, starting with the Bush twins, spent time volunteering in nursing homes and places where these people often live out the balance of their lives. A more realistic picture of what care is involved, what suffering is involved, would develop. I have valued each and every one of my patients,and have provided the best care I could. I've learned so much from them, I can't begin to describe it. Yet I wonder, is it right that I learn and grow on the backs of other's suffering? Again, no easy answer, not for me