Judy and Christine

 Printer friendly version

I am the legal guardian of Chris, a 41 year old woman with Down syndrome who I have known for 22 years. She has several medical conditions including a history of bowel obstructions and has adhesions (scar tissue) on her bowel. What should have been a standard response to this condition almost led to Chris’s death after she was admitted to a regional hospital.

The group home staff where Chris lives became concerned when she started vomiting undigested food that had been eaten 3 days before. In hospital she was put under observation but no further action was taken despite the fact that Chris continued vomiting every 15 minutes. Meanwhile, the group home staff and I cleaned her up; the hospital staff only attended to her to do 4 hourly observations. I was certain that she had a bowel obstruction as I had seen her like this before. The lack of attention to Chris was appalling. Later the Registrar admitted he hadn’t read her file all shift as he thought she was a “Downs” patient he had last week.

After 36 hours, Chris was sent to a nearby major hospital to have a nasogastric tube inserted to drain the fluid. I kept warning them that unless Chris was sedated she would likely pull out the tube. They did not sedate her. Chris was returned to the regional hospital where she inevitably pulled out the tube and breathed the contents of her stomach into her lungs causing pneumonia and near respiratory failure.

She was then admitted to intensive care in the major hospital where she was put on a ventilator to assist her breathing. The physician insisted that I agree for Chris not to be resuscitated if they took her off the ventilator. I refused as they had not given me any information about her condition, prognosis or possible treatment. He kept saying that I needed to think of Chris’s quality of life. I was furious; they knew nothing about Chris’s life and I knew that if she pulled through she would continue to have a good life. I stuck to my guns but this was extremely stressful for me.

However the nursing staff in intensive care staff couldn’t have been more supportive. They were interested in finding out how Chris communicated and were pleased when they saw the number of visitors she had; even staff who had worked with her 20 years before. So much for her having a poor quality of life! In intensive care, Chris had surgery to clear the bowel obstruction, from which she fully recovered.

So much of this fiasco could have been prevented if the regional hospital staff had been prepared to listen to the people who know Chris well. They had been so unsupportive.  Firstly they didn’t believe that Chris was vomiting whole food from 3 days before and then, when she was supposed to be under their care, they left the group home staff and me to attend to all of her needs.

Chris has permanent lung damage as a result of this event but I was determined that something positive should come out of it. So, after media attention as part of a NSW CID campaign, the Director of Nursing at the regional hospital asked if I could present an information session on intellectual disability to the nursing staff. She was very supportive of the idea and accepted that they could have provided better care. I was careful in my presentation not to point the finger at anyone but made sure that I drove home the point that, when a patient is unable to communicate, they must take on board the information that is provided by the carers. I feel the presentation was well-received and am hopeful that next time those nurses come across a person with intellectual disability they will look after them better.

Judy Harper