73% of Americans say they’d prefer to die at home, but as many as half die in a hospital setting. What do YOU want? If you don’t speak up, your choices are often made for you.
This week’s Patient Voice Principle addresses “a culture where partnership and the independently gathered information and research done by patients and their families about their own cases is welcome and encouraged.” Randi Oster‘s story about her father’s end of life, excerpted from her award-winning book, Questioning Protocol, shows us how families can — and should– have a say in treatment options.
Randi’s dad, Eugene Victor Redmond
Randi’s story: 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. He and my Mom lived with us and took care of the kids while I worked more than 50 hours a week for GE and my husband as a hospital administrator. I was the major breadwinner of the family and felt the pressure of the “sandwich generation.” I tried to balance corporate demands, children’s demands and elder care, while keeping my husband happy. Sometimes, my life felt like a house of cards and a feather could take it down.
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. I told her I was in the hospital with my dad. 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.” Before she hung up she told me to take care of my dad and that she’d handle the work stuff. I felt so appreciative of her support. Now, I just had my family to manage, at least for a day.
As I hung up the phone, a young female resident surgeon from an Ivy league school was meeting with my father telling him the doctor told her to tell him they 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 actually be listening, not even me. Lying in bed, he looked up at me almost as his last resort and asked again, “Can you please find out what the surgery entails?”
Randi Oster with her dad
My parents, who just yesterday seemed perfectly fine, were in the middle of a medical crisis. Nothing really prepared me for it. I was their “little girl.” Our roles reversed in that instant. Still in shock about the quick turn of my dad’s health, I held back my tears. “Sure,” I said.
I grabbed another tissue and stepped out into the hall. I shut my dad’s hospital room door and braced myself against the wall for support. The doctor’s imposing frame next to my petite build was not ideal for level conversation, something I learned in GE was critical during negotiations. I always looked for chairs to sit in to level the height disparity. But there were none in the narrow hall. The doctor had no choice but to look down on me. Instead of gaining control by acting calmly, showing the poise of a typical Fairfield County executive and introducing myself to the doctor, as I was trained to do in GE, I skipped that step. Instead, my own pushy New York ways combined with my boss’s suggestion to ask the hard questions made me just blurt out, “How long will he live without surgery and how long with surgery?” I could not believe I was asking such a cold question. I felt a lump in my throat, and touched the wall with both hands behind my back.
The doctor smiled, as if he was proud he knew the answer and said, “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. 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 after care, 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.
As I was leaving the next day, a resident pulled me aside in the hall. “I got to know your dad last night,” he said. “He’s a remarkable man and brave to make the choice he did.” He hesitated and whispered, “You know, the doctors get $15,000 for the surgery and then it’s $3,000 a day for after care. They don’t tell you that.”
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.
“Come here,” he said.
“You seem fine. Can it wait?” My terseness was in direct proportion to my pressure for meeting the work deadlines.
“Randi, get me a piece of paper and a pen.” He said this firmly and I stopped touching all the electronics and grabbed the paper.
“Write this down: ‘Your life is more than your job.’ I wrote, as instructed, in big letters across the paper.
“Now, give me the paper,” he said.
I handed him the paper and watched him scratch out his signature. It was clear the brain tumor was progressing because he struggled to write his name – Eugene V. Redmond. He handed me the paper, with his chicken-scratched signature, and we just looked at the paper and hugged.
As the days progressed, he lost movement in his legs. He needed assistance peeing. I know he was ashamed to have me hold the plastic jar for him, my strong capable father. By week seven, he was “shadowing.” He needed care 24/7. Between my husband, my Mom and me we all did shifts. We kept him home until we were unable to care for him but visited the hospice every day.
On the fifth day, he was close to the end, without pain. My mom and I decided not to leave his side. We sat in the room reading magazines and chatting. Sometimes our reminiscing even made us laugh. I looked over at my dad at saw a slight smile. Suddenly, I had this feeling as my mom and I continued leafing through magazines. Nothing changed in my father’s breathing, nothing changed in his position, nothing changed in his facial expression, but I felt drawn to him. I walked over to him as he lay on the bed. “Mom, come here,” I said.
“Why?” she asked, almost like she didn’t want to get up from reading the magazine.
“Just come here, now,” I gently urged, wanting her to stay calm.
She put down the magazine, and got up from the chair and walked around the bed to see my father’s face.
“Kiss him and tell him you love him.” I gave her clear instructions.
“Now? Why?” she said.
“Just do it,” I encouraged.
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 inhale. Then he stopped breathing at that moment.
“What happened?” she asked, seeming a little confused.
I took my dad’s hand and my mom’s and just felt the moment and let my father lovingly pass. Deep down I do not believe my knowing the exact timing of when to say our final goodbye was a coincidence. I was overwhelmed with gratitude. Eugene Victor Redmond, my father, lived and died, with no pain and dignity.
As Randi points out, Medicare spends nearly 30 percent of its budget on beneficiaries in their final year of life, with approximately half of Medicare dollars spent on patients who die within two months. Yet, given a moment of hope from the medical community, it’s hard to say no to treatment. But sometimes less care is truly more.
The takeaway for patients and families: It’s much harder to have clarity and resolve over important end-of-life issues during a crisis. Making your preferences about clear to your family in advance gives you control and comfort, and is a kindness to them during a stressful time. The Conversation Project is a good place to start.
