I'm so angry.
Dying shouldn't be like this. It shouldn't be about battling with the healthcare provider in order to obtain adequate care for the patient. It shouldn't be about watching your loved one suffer incredible mental anguish and physical pain. Hospice is supposed to be about palliation, about making sure the patient is comfortable. My dad's the opposite of comfortable.
Our hospice provider isn't doing a thing to help get Dad's extreme agitation under control. Their answer is always to give more meds. And I'm definitely in favor of meds, when they're needed. However, the meds aren't helping.
Dad needs in-patient care, but the hospice provider says they can't locate a facility in which to place him. That's the wrong answer, as far as I'm concerned.
With Dad writhing around in bed, about to go into full-blown combative mode, I call the hospice nurse manager.
"What's the status on placing Dad in a facility?" I ask.
"Well, I've called every facility we're contracted with, and none of them can take him," she says.
I say nothing in response. Tension-laced silence flows across the phone line.
"The thing is," she continues, obviously flustered, "Medicare guidelines require us to use a facility that has an RN on staff 24/7, and there simply isn't one in this town. So, there's nowhere to admit him."
I channel my anger into the iciest tone I can muster. "So, what's your plan?"
She begins to make an excuse, and I interrupt her. "You need to understand this is now a patient safety issue. Dad is pulling out his hair and poking himself in the eye, he's so agitated. You have a moral, ethical, and legal obligation to keep Dad safe and to keep anyone else from getting harmed."
Again, silence stretches between us.
"Let me call you back," she finally says. I say nothing and hang up. I think I've made my point.
Two hours later, the hospice nurse manager calls back. "We're going to do intensive comfort care," she announces. "We'll have an RN at the bedside beginning at 7:30 tomorrow morning, and she'll stay the entire time you're at work. She'll be there for the next two days. Her job will be to get his agitation stabilized. Will that work for you?"
Although this still doesn't solve the overnight problem, I agree to the plan. My hope is that a couple days of intensive nursing will get Dad's symptoms controlled and his medications titrated properly.
Lee tells me I'm a lioness and that I did the right thing. He says Dad would be proud of me. I'm not looking for accolades. I just want Dad's suffering to end.