And the beat goes on...
Blue Lotus blog post...chapter “I’m obsessed with these end of life papers for a reason”
So....since we’re talking about planning end of life things...(were we talking about that?) let me tell you the story about the lovely lady in her early 60s who came into hospice following a serious stroke. Hardworking, salt of the earth gal. Had a family to whom she had expressed that “when it’s over, it’s over.” Wrote down that wish in a document that stated if she had no “quality of life,” there were not to be “extraordinary measures” taken to prolonging her existence. She thought she had it covered. After all, the document said so.
Enter cerebrovascular accident. Sudden.
“Cerebrovascular accident: The sudden death of some brain cells due to lack of oxygen when the blood flow to the brain is impaired by blockage or rupture of an artery to the brain. A CVA is also referred to as a stroke. Symptoms of a stroke depend on the area of the brain affected.”
The long and short of the tragedy was that she was gone. Vegetative state. No longer present. Except...somewhere along the line, she forgot to give a copy of the “no extraordinary measures”paperwork to her doctor and hospital. Her daughter had a copy...somewhere. Her friends thought they remembered she had signed “something.”
And the E.R. staff, of course, didn’t have time for that nonsense. They hooked her to a ventilator and eventually inserted a feeding tube.
When she entered hospice, the ventilator was gone, but she was kept alive by the presence of a line, into which the staff dutifully poured TPN. For those of you who don’t know the term, it’s Sunday dinner In a bottle, only healthier.
“Total parenteral nutrition (TPN) is the feeding of nutritional products to a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, salts, amino acids, lipids and added vitamins and dietary minerals. TPN is normally given through a large central vein. A catheter is inserted into the vein in the chest area under local anesthesia and sterile conditions. Often the placement is done in an operating room to decrease the chance of infection.”
Soon the TPN was replaced by a feeding tube, the specifics of which as a non-medical person I won’t try to explain. Suffice it to say, the feeding tube goes to the digestive tract while the TPN is funneled directly to a vein. It may not be fried chicken, but it’s enough to keep your heart beating.
So patient at the end of the hall was “stable.” Alive. Sort of. Heart beating. Respirations. And there she was. Indefinitely.
And then the battle began. The family couldn’t decide or agree on whether this was their mother’s intent and wish. (Seriously? Who would wish that existence? Those who are afraid of death, apparently.). The medical staff was conflicted. Was this life? Wait...was that intentional eye movement? Was she alive in there somewhere? Doctors agreed, basically, that she was not “alive,” but then she was not “dead,” either.Should the feedings be stopped? Yes? NO? Limbo on the medical wing.
And the beat went on. And on. And on.
There are complications to tube feeding. Sometimes fatal complications. The daughter said to me repeatedly, “I wish she’d die. She would hate this. But I can’t unhook her. That would be murder. I wish I’d had the paperwork the day she had her stroke.” The “paperwork” was safely hidden in a file in a drawer in a chest in an office...
The outcome. She was moved to a long term care facility, where she existed a bit longer, experienced complications, died. Long after the stroke. Thousands and thousands of dollars of care. Horrible grief for the family and for the staff who cared for her. And I can’t even imagine the anguish a soul must feel, trapped in a body so severely damaged. But that’s another story...
There was a court case. There were attorneys. There were scores of nurses and doctors. Because her paperwork was in a drawer...in a file in a drawer in a chest in an office...you get it.
What a pleasant blog and Facebook post? You’re obsessed with death, my friend says. Yeah. I am. I’m obsessed with how we take one of two life inevitabilities that surely can be miraculous and bastardize them with our incompetence.
I’m going to die. You’re going to die. It won’t look like a 1940s movie scene, most likely. But it doesn’t have to be torturous.
And it’s our job to make sure our “no extraordinary measures” paperwork ends up in the place that it will be honored.
This is not morbid. This is reality. Let’s get it out of the way to the best of our abilities so we can move on with life.