It was noon and my lunch tray did not arrive.
At 12:05 I put on my call bell to ask for my lunch. I sat in my bed and waited.
At 12:10, no lunch and no nurse’s aide.
I have severe diabetes with a glucose level around 400; it should be below 120. Because I also have myalgic encephalomyelitis, I cannot take insulin. I have to eat regularly at 8:00 a.m., noon and 5:00 p.m. Otherwise, my glucose level drops severely and rapidly. It was 12:15: no lunch, and no aide to bring me orange juice.
At 12:20 I put the bed down, lay down and closed my eyes. My glucose was falling and if I did not eat then I would “fall asleep,” i.e., go into a diabetic coma.
At James Square nursing home, a MOLST (Medical Orders for Life-Sustaining Treatment form) is mandatory. Mine says Do Not Resuscitate (DNR)—if I am found unconscious then no medication is to be administered, no IVs are to be started, no ventilator, no nothing. My BiPAP is to be continued for comfort care; that is all.
If I slip into a diabetic coma because James Square has failed to meet feeding needs, then it’s over. No restorative action is to be taken.
At 12:25 nurse Lisa came in with my tray. I was pretty well gorked out and just laid there and looked at her. Finally, I asked her if she knew I had diabetes. She said yes. She said Food Service had just delivered my tray.
Then I asked her if she knew that I couldn’t take insulin. Again, she said yes. I asked her what she had done to get my tray. She said she was busy taking care of other patients. What am I—chopped liver?
I explained to her about my MOLST and DVR. I explained to her that if I didn’t get fed on the necessary schedule and went into a diabetic coma, then there was nothing she could do but stand there and watch me die.
She said that it was my job to work it out with Food Services.
I have been at James Square for six months. I have talked about this problem to aides, nurses, unit nursing managers, diet techs, Food Service supervisors and the Food Committee with Food Service director, Joe, and his staff. I have talked to everybody.
Several weeks ago, on a Tuesday, I talked to Bill Wilson, assistant administrator for Food Services. He said he would investigate and report back by Friday. A month later, he has not reported back.
Last Friday, I met with Joe. He said that he and Wilson were meeting on Monday regarding my feeding needs. Today is Wednesday.
And nurse Lisa says it is the patient’s job to work it out with Food Services, not hers or anyone else’s.