As a nurse who has specialized in the care of adults with developmental disabilities for more than 18 years, it was refreshing to see overdue attention given to the problems my patients face when hospitalized. There are so many examples I could cite to illustrate how poor care has resulted in negative outcomes. The research done by Smeltzer and colleagues summed up the situation quite well.
I was horrified, yet not surprised, when I read the article about Michael Ogg. I've witnessed first hand every negative experience mentioned in the article when my husband's uncle, a very kind-hearted and educated priest, suffered a stroke that left him cognitively intact but paralyzed on his left side. He struggled for a year and a half to learn to walk again with the use of a leg brace and pyramid walker (and an intrathecal baclofen pump). He maintained his sense of humor and optimism. He was eventually able to live in his own apartment in an assistive living facility. He remained active, useful, and involved in his parish. During this time, he wrote articles, kept up with social contacts, and even went on trips with my husband and me.
Two years ago in June he was hospitalized. Initially misdiagnosed, he eventually had his gallbladder removed. I went to the hospital as often as I could, showing the staff how to put the dynamic splints on his left leg and arm and explaining the need for him to wear them at night. I also showed them how to put on his leg brace in the morning, and my husband's uncle reminded the staff about his assistive devices. In spite of this, the staff never put them on him. They also never got him up during his 10 days of hospitalization, never sent him to physical therapy, never shaved or showered him, and didn't help him use the toilet when he asked for help. The staff spoke to him as if he lacked any intelligence and put adult diapers on him even though he was fully continent of bowel and bladder because they were “too busy.” Sometimes he waited two hours for help to get on the toilet, which eventually led to some episodes of urinary incontinence (which disappeared immediately upon hospital discharge).
As a result, after 10 days he developed such severe foot drop that they sent him to a nursing home for rehabilitation because his brace no longer fit. The care in the nursing home wasn't much better and certainly did nothing to help him regain his independence. He has been in a nursing home ever since—reading books and watching CNN. His independence is gone, along with any hope he had of recovery. He is a broken and depressed man just wishing he could die.
Taking care of people with disabilities is staff-intensive, challenging, and costly. It's no wonder that overworked and understaffed nurses and unlicensed assistive personnel resent the presence of these patients on their units. Hopefully these two articles will help nurses become more sensitive to the plight of these patients and improve their ability to provide quality care.
Anne M. Teubl, RN, CDDN