Since I've been through end-of-life counseling twice I feel like I can speak up.
Allow me to avoid the politics and controversy and cut right to what it's like where end-of-life discussions are "between a patient and his doctor".
Where life and death and quality of life decisions are made. Where fortunes and sanity are on the line. Where heartstrings are wrenched.
During Josh's first chemo treatment, he was still recovering from bone surgery in his right thigh. He couldn't put any weight on his leg so he had to sit on the edge of the bed and use a urinal. I helped with that.
He wasn't a very good shot.
After two days I started getting sores on the back of my hands. I mentioned this to a nurse. She asked if I were wearing gloves when I helped Josh pee. I said no. Said said that the chemo drugs are like a powerful solvent and that I needed to protect my skin from his urine.
That's the stuff they put into our kids' bodies.
Nothing was going right with Ben's leukemia treatments. He should have been in remission after 5 days. It took 3 weeks. The side effects and complications of the chemotherapy started almost immediately. The doctors quickly decided to reduced his chemo doses to 75%. A couple months later, they were reduced to 50%. Meds to counter the pain, infections, nausea and other symptoms continued to mount.
Three months into treatment we were exhausted from being in the hospital and asked to be trained to treat Ben at home. Managing this was a daunting task. I organized Ben's weekly regimen on a spreadsheet. When I gave it to an oncologist to verify it, he was physically startled at all of the meds. The chart below is for one week in August 2007.
This was actually an easy week. When Ben had intense infections, he would sometimes be on two different IV antibiotics and IV nutrition that had to be administered on screwy schedules around the clock. The whole family moved around like zombies.
This is a picture of what the chemo did to Ben's mouth. Chemotherapy drugs are designed to kill fast growing cells like cancer.
They also kill other fast growing cells like the lining of the mouth, esophagus, stomach, intestines and, of course, hair follicles. This is at a 50% dose.
That's when the six oncologists had a meeting. They were divided 3 and 3. One group wanted to intensify Ben's chemo. The other wanted to stop chemo and focus on pain management.
It was interesting that the 3 who wanted to go full steam ahead were the younger group. Their hearts were in the right place. For 2 of them, I think they couldn't bear to fail our family. They helped us through Josh's situation just a year before and intensely didn't want us to loose another son.
The sentiment of the three older physicians was expressed best by one who said, "We've done enough to this boy. We need to leave him be."
Nancy and I thought and felt that they were right and we ended chemo therapy. We knew that Ben would relapse and that he couldn't tolerate treatment any better at relapse than he was at that time.
We knew that Ben would die.
Mercifully, Ben died a peaceful death from complications of the chemo rather than relapse. (see The Most Tender Mercy)
These were awful decisions to make. They were made with God, family and our friends - the oncology team that loved and cared for Josh and Ben and the rest of our family. I can't imagine having the government involved in that sacred trust.