One day in November 2013, my husband Ahmad found that he couldn’t walk without dragging one of his feet. Just six months earlier, he had been jogging daily. But then he was diagnosed with metastatic bladder cancer, and before long he had a tumor pressing on his spine.
We called the doctor, who worried that the tumor was compressing his spinal cord, and paralysis might be next. So he ordered us to call an ambulance and report to the hospital for an immediate MRI.
Neither of us wanted to go to the ER. We had been there many times in months since his diagnosis, and we were tired. But metastatic cancer is a steady stream of worries that worse things are waiting if you don’t follow instructions. So, we went.
That morning was a busy one in the ER. Ahmad, still on the stretcher, was parked in front of the ambulance entrance in a drafty hallway. Hardly anyone spoke to us as we waited hours for a room. An aide incorrectly connected a catheter, leaving my husband wet and cold. When I tried to fix it, a nurse brusquely told me that was her job. Tired as I was, there was no place for me to sit unless I left Ahmad alone in the hallway and went to a waiting room.
I eventually sat on the floor but was told that wasn’t allowed. I said I was exhausted; someone brought a stretcher for me to lie on.
When Ahmad at last was taken to a room, I tried to get up but I could not will my body to move. A nurse came by a couple times and told me I needed to get up. I kept trying. But I couldn’t do it. Fatigue and inertia overwhelmed me.
Then a woman in high heels came by to inform me that she was in charge of “facilitating patient flow.” I was blocking her flow.
This wasn’t my finest hour. I wish I had the energy to respond differently, more diplomatically.
“Facilitating patient flow,” I snapped, “doesn’t sound like it has much to do with helping people who are sick or in pain.”
She clickety-clacked away. Minutes later, a man arrived and told me sternly, “you either need to go home or you need to be admitted as a patient.”
And I whispered, “admit me.”
So the caregiver also became a patient.
In the context of my world during those very difficult months, the phrase “facilitating patient flow,” captured, for me, so much of what is wrong with U.S. healthcare.
As soon as I was a patient, I was given an anti-anxiety pill and allowed to nap quietly in a dark room. Nobody scolded me. Nobody seemed angry with me. After an hour of napping, I was able to go to Ahmad’s room and help him.
I believe what also helped refresh me was knowing that my own need for help was recognized. At last, someone saw that I was distressed and exhausted enough to be a patient myself, if only for an hour.
This was, of course, a pretty expensive nap. I believe the bill for occupying that bed was about $1,200; through our HMO, we were responsible for a $100 copay. However, that seemed entirely reasonable compared to the roughly $25,000 our insurer was billed for the emergency MRI.
I was at my worst that day. So was the health care system. Other times, we both did better. But that day was not an isolated incident in the months leading to my husband’s death. I’ve heard so many similar stories from other caregivers that I haven’t been able to stop thinking about why getting health care is often so difficult.
What will it take for the health care system to recognize the distress that caregivers to critically ill cancer patients face each day?
Renata Khoshroo Louwers is a writer and a bladder cancer patient advocate with the Bladder Cancer Advocacy Network and the Research Advocacy Network. She lives with her new husband, Tim Louwers, in Virginia’s Shenandoah Valley and San Francisco. This guest column appears through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for more than a million patients and caregivers.