Oxygen part 12

Today's visit was before noon. Marie was initially asleep, but the nurses came in to move her up higher in the bed (the bed which was set to about 30 degrees - I have given up on pointing out the sign on the wall. At this stage I must assume that either the doctor has changed his mind or most of the staff are incompetent.).

When she woke up, she was in fine fettle. Someone - she wasn't sure if it was a psychologist or psychiatrist - had come to do an assessment. Apparently Marie had only managed to correctly answer 11 out of 16 questions.

Marie told me that she had wanted to know which ones she missed. One of them was a test where the shrink asked Marie to repeat after her:

"Tinkle, tinkle, little star..."

And Marie said "Twinkle, twinkle, little star..."

The shrink pointed out that she had said "tinkle"not "twinkle".

Marie's hearing aid was in the box on the bedside table.

"Did you tell her you have some hearing impairment?" I asked.

"Yes, but they don't listen."

"What else did you get wrong?"

Marie held up one hand and pointed at it with the other.

"What's this?" she asked.

"Your hand," I said.

She shook her head. "No. I am pointing at my wrist."

"Could you see that?"

"No. She was standing right there, right in the centre."

Again, the macular degeneration. With her peripheral vision, Marie had made out that the doctor was pointing to her other extremity, but she couldn't see it clearly. So she failed the question, which is supposed to be testing her mental acuity. I think it was more a test of the acuity of the doctor, and she failed.

"Did you tell her you are blind and can't see anything clearly in the middle of the field of vision?"

"Yes, but they don't listen."

I then heard about how it was the second night in a row she had needed extra painkiller because of the pain in her gut. The staff had gone through the dance of saying they would have to call the doctor and get an order because there is no standing order. Now, Marie is under the impression that there IS an order because when she was at the height of her distress some weeks ago, there WAS. It is hard to know if this has been changed and not communicated to Marie, or if it was changed and Marie was told but she has forgotten, or if it was not changed but the standing order is so far back in the file - like the order for the bed angle - that no-one thinks it exists.

They got the order and, for the second night in a row, brought hydromorphine. Marie, for the second night in a row, refused to take it.

Now, when Marie came in to the hospital, she told them she had previously experienced negative side effects to morphine. They gave her dilaudid (hydromorphine) as an analgesic and she had a couple of rough days which included hallucination. The doctors later decided that this was likely more owing to her electrolytes being unbalanced than any reaction to the dilaudid. This has been explained to her many times by the staff and by us, but she does not believe it. She has even had dilaudid since then - with no negative side effects. But Marie doesn't want to risk it - and given her helplessness in the hospital, I have some sympathy with her position.

To her mind, she has told the doctors she can't have morphine, and the hallucinations proved it. So she does NOT expect nurses to try to give her morphine, and she complains when they do. The nurses are caught in the middle - a patient who needs pain relief but refuses what the doctor orders.

"So what happened last night?" I asked.

"They went out of the room to call the doctor again, and then they came back in and gave me an injection. For all I know it was the hydromorphine and they just waited outside the room."

"And did it work?"

"I was out like a light and have had trouble waking up all morning."

"That's what you want it to do - knock you out so you can sleep. No hallucinations or side effects?"

"No."

"Then it's all good."

But it isn't all good, of course. We should not be having this conversation at all. She is of the opinion that no-one is listening, and that the staff are doing things that put her health at risk. Since we have already witnessed many incidents where this is true, it is hard to combat the impression.

The nurses change so often that Marie seldom knows who to expect - and whether or not the person she gets will know about her impairments or issues. My experience is that the nurses are generally quite competent at their tasks, but ill-informed about the needs of the patient. That is one of the problems with such a fast rotation - nurses don't get to know how to meet the need in a competent and efficient manner, and the patient has to keep going over the same territory - or fear the same risks. It is exhausting for the patient and frustrating for the nurse, who perhaps unjustly appears incompetent or stupid.

Last night we had a "floater". She knew very little about Marie or her condition, but she was a nurse who paid attention and who listened so everything went well. So is it some kind of compassion fatigue when the other staff - the ones who have been dealing with Marie for almost two months - either can't get it right or don't communicate the changes in the care plan?