The Disabled Patient in the Hospital
When I received the call to visit a patient at a local, Long Island hospital, I was confident that this wasn’t going to be a simple visit. The patient I was going to see was someone who couldn’t use her arms or legs. Completely disabled, she was living in real time the stories I have been collecting about how people, with disabilities are treated and feel unsafe in the hospital.
She had her personal care assistant with her. In most cases Medicaid or insurance will not cover a home health aide once the patient is admitted into the hospital. The hospital is supposed to care for the patient. In this case the aide, caring for the patient for over 10 years, told me she is not leaving her - with or without payment. God bless her.
I gave her aide some much needed time off to get a bite to eat and sat with the patient to talk about why I was called. She started off telling me about being admitted. She had the symptoms of pneumonia. Because of her size and the lack of equipment to move her, she was not given a CAT scan that the doctor’s felt was needed. She did not want untrained people attempting to lift her. If she began to fall she could not stop herself, she could not protect herself. I could only just imagine the fear this would bring to someone with her sharp mind and to a woman who has knowledge of her needs.
On two occasions she told me, before her aide came to be with her, her food tray was left out of reach. She could not feed herself nor could she even turn her head to see where the tray was. All she knew is that it was nowhere in sight.
She was coughing up phlegm, exactly what is needed to break up pneumonia. But she told me no one was there to suction her. Her care, she felt was below standards. As she struggled to breathe the day before, she was unable to call for help. When someone finally checked in on her, they found her oxygen was not plugged in. The call bell, out of reach was something she couldn’t use anyways.
So what if she had no family to sit at her bedside? They have to work. What if she didn’t have such loyal caregivers – one who was there at night and another during the day “with or without pay”? Could she easily get bedsores that would be blamed on her lack of movement? Could she have choked to death on her phlegm? What if she fell out of bed trying to move or get up? Are nurses and other support staff supposed to continue with the same case load of patients and a disabled patient? I was told by a hospital administrator a year ago that they do tell their nurses to take special care of patients with disabilities. So, I asked him, are you giving those nurses less patients? He said they didn’t.
We need to think about how hospitals will start caring for people with disabilities. This experience is not unusual. I have been hearing similar stories for two years. The patient said to me that everyone was so “nice” but thank goodness she recognizes that nice does not mean safe.
Unfortunately, this can be any one of us someday. There must be some system put in place to be sure these patients are kept safe, and keep their dignity.
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