Patients' stories

Best Advice: Don’t be Afraid to Ask the Hard Questions

Best Advice: Don’t be Afraid to Ask the Hard Questions

I brought my 79-year-old dad to the emergency room because to me it looked like he’d had a stroke. He could not hold up his Carvel ice cream cup, and his mouth was drooling and sagging. After 11 hours of waiting in the ER and undergoing a CT scan, an attendant brought him up to a room. The diagnosis was a brain tumor called a glioblastoma. It is like tree roots growing throughout the brain. All I wanted was for my father to be fine.

With my father sitting in his hospital bed, he told me he just wanted the facts about his prognosis and asked me to help him get them. My mom just held his hand and tried to hide her tears, as I stared at them both in a daze. My cell phone rang and brought me back to my work reality. It was my manager. She, too, had been through medical emergencies, and in unemotional corporate speak, she told me the best advice ever:

“Randi, the doctors will only answer the questions you ask. They will not give you more information than you request. Don’t be afraid to ask the hard questions.”

As I hung up the phone, a young resident surgeon from an Ivy League school was meeting with my father, telling him that they’d scheduled brain surgery for the next day. The caliber of her education meant to me that she knew surgery was the best next step; otherwise wouldn’t we be discussing other options?

All day my dad kept saying he wanted a “minimally invasive approach” and did not want chemo and radiation. He kept saying this to anyone who’d listen, but no one seemed to be listening, including me. Finally, as what seemed like a last resort, he asked “Can you please find out what the surgery entails?”

I grabbed a tissue and stepped out into the hall. I shut my dad’s hospital room door and braced myself against the wall for support, and there, in the narrow hallway of the hospital, took my boss’s suggestion to ask the hard questions. I blurted out to the doctor, “How long will he live without surgery and how long with surgery?”

“Eight weeks without surgery and eight months with surgery,” the doctor answered. He then 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. He might 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.”

That is exactly what my dad wanted to avoid. Why would they have scheduled this surgery without listening to him? I wondered.

Asking the hard question first really told me the critical information: eight weeks versus eight months. “So,” I said, “without surgery he could go home, have no additional pain, meet with his friends and family and slowly deteriorate. He will eventually fall asleep and not wake up. With surgery, he could be a vegetable, but maybe not. But he definitely will have pain and need aftercare, starting tomorrow?”

“Yes, but don’t forget — he’ll also have time for one last cruise,” the doctor said, sounding like a salesman to me. One last cruise reverberated in my head. My father should go through all of this pain for one last cruise? In the couple of minutes the doctor spent with my dad, he clearly did not know him. After the Navy, my dad never wanted to go on a ship again.

We took my dad home. At the beginning, he was fully mobile. I invited his friends and relatives to the house, and we spent the weekends laughing over old photo albums. He had time and brain capacity to impart all his life wisdom to me.

As the days progressed, he lost movement in his legs. He needed assistance peeing. He needed care 24/7. Between my husband, my Mom and I, we all did shifts. We kept him home until we were unable to care for him and then visited him in hospice every day.

On the fifth day, he was close to the end and still without pain. My mom and I decided not to leave his side. We sat in the room reading magazines and chatting, and sometimes our reminiscing even made us laugh. At one point, I looked over at my dad at saw a slight smile. He took one last inhale as my mom and I kissed him and told him we loved him. And as we said our final good-bye, I felt overwhelmed with gratitude. My father, Eugene Victor Redmond, lived and died, with no pain but with complete dignity.

Randi O., Connecticut

Here is practical advice for caregivers about tests and treatment for seniors.