Randi Redmond Oster is a member of the Right Care Alliance health-care advocacy coalition and author of the book “Questioning Protocol: How to navigate the healthcare system with confidence.”
Sometimes less really is more. I’ve learned this can be true when deciding on the best course of health-care treatment. Sometimes “no” is the better option.
After spending 11 hours in the ER going from scan to scan, my 79-year-old father asked me to help him get the facts about his prognosis. We knew he had glioblastoma — the same brain cancer Sen. John McCain (R-Ariz.) has been diagnosed with — and we knew generally how bad this cancer is. We also knew that his doctors were urging us to go after the cancer with everything they had. “Don’t you want to do everything to save your dad?” one doctor asked me.
Yes, I loved my father. But he, my mother and I also knew that glioblastoma is invariably fatal. Doing everything was not the only choice.
The next day my dad kept saying that he wanted a “minimally invasive approach,” that he did not want chemo and radiation. He said this to anyone who would listen, but no one seemed to be listening. Instead, he was already scheduled for surgery.
When the surgeon finally arrived the night before surgery, we stood in the bustling hall outside my father’s room. I looked up at the imposing doctor, screwed up my courage and asked: “How long will he live without surgery and how long with surgery?”
His reply: “Simple. Eight weeks without surgery and eight months with surgery.” He continued with the fine-print speech: “There is a very good chance with brain surgery he could experience some paralysis on one side of his body and have trouble speaking. He probably won’t see colors. Also, he’d still need chemo and radiation. He’d be home with the family so you could provide care at home, take him for treatments and help him with pain from surgery.” Then he added what he saw as the best argument of all: “He’ll also have time for one last cruise.”
One last cruise? After serving in the Navy, my dad never wanted to go on a ship again.
This was all exactly what my dad wanted to avoid: pain from surgery, nausea from chemotherapy, the bother of going back and forth to the hospital for care. He preferred eight weeks of being with his family over eight months of disability and unpleasant treatments.
After my dad elected not to have surgery, it felt as if the hospital threw him out. “There is nothing we can do for him,” somebody said as they showed us the door. I am pretty sure the person was a social worker — one who made me feel as though I did not love my dad because I was not doing everything to extend his life.
Once home, however, my dad had six great weeks. He felt fine, and his friends and relatives spent weekends with him. We laughed over old photo albums. He retained enough brain capacity to impart some life wisdom to me. One day, when I was stressing from work pressures, he called me over:
“Write this down: ‘Your life is more than your job.’ ” I wrote, as instructed, in big letters across the paper.
I handed him the paper. He scratched out his signature. It was clear the brain tumor was progressing. He struggled to write his name — Eugene V. Redmond. We hugged.
In the seventh week, without pain, he was close to the end. My mom and I did not leave his side. I looked over at my dad. Nothing changed in my father’s breathing, nothing changed in his position, nothing changed in his facial expression — a slight smile — but I felt drawn to him.
I kissed him first on his forehead, and then my mom leaned down and kissed his cheek and said, “I love you.”
He took one last breath.
The hardest part about my father’s care was getting his doctors to listen to what he wanted. A bad prognosis doesn’t mean that aggressive treatment involving pain and suffering is the only solution. Most patients don’t know that, because it is easier for a doctor to deliver a message of hope. It is easier for patients and loved ones not to ask the hard questions.
But the impact of avoiding the facts leads Medicare to spend 25 percent of its $670 billion budget on patients’ last year of life. The highest payment is for the expense to die in a hospital, where most people would not choose to spend their final day. When patients feel they share in decisions based on evidence for their course of treatment, they have more realistic expectations.
My dad chose his course of treatment. Others choose differently. There is no right answer — except that patients deserve to understand their options, without pressure.