How can I help family members who are uncomfortable remaining at a patient's deathbed? I want to be sensitive to their needs, but I don't want them to later regret missing the experience.—J.J., IND.
That's a sensitive and insightful question. I hope the following anecdote helps
I once cared for a beautiful woman who'd been diagnosed with breast cancer with extensive lung metastasis. Penny generously shared her story with me, responding calmly to my gentle questions about God and cancer, disfigurement and dreams. But when I asked how her husband of 40 years was dealing with the prospect of losing her, she became fretful.
“Oh, he just can't handle this,” she gasped hoarsely. “He says I'm not praying hard enough to be healed.”
“Did you explain to him that healing comes in many forms?” I asked.
“Oh yes, but he doesn't want to hear that. He just won't face it. He'd drive me for my chemo, but he'd never go in with me.”
After our conversation, Penny was discharged from the hospital. But when she was readmitted just a few days later, she was unconscious and dying. As I entered the room, her nurse asked if I'd seen her husband.
“He came with her from the ED, but then left,” she said. I volunteered to find him.
Reaching him at home, I explained that his wife was dying and encouraged him to be with her. I said I understood how hard this was for him and offered to stay with him every step of the way.
When I hung up, I was unsure what he'd do. I returned to his wife's room.
About an hour later, the door opened. There stood a terrified but courageous husband, his frightened eyes just visible beneath the brim of his baseball cap. He cautiously walked to the foot of the bed. I explained that we'd just given Penny some morphine and that she was breathing easier. He stood as if frozen, unable to move any closer. He couldn't speak to her, couldn't touch her. Doing so would make true what he dreaded most.
“Do you want to pull up a chair, Mr. Wells?” I asked. “You could hold her hand.”
“No, thank you,” he said politely. “I'll just stand here.”
I realized that what I was seeing was the best he could do. He'd had 2 years to consider that this hour would come someday. It was enough that he was here.
Over the next 2 hours he asked me half a dozen times, “Do you think she might pull out of this?”
“No, sir, I don't. She's going to die soon and I'm so sorry, but you know what? You're here, and that's the best thing you can do for her right now.”
He continued standing. She continued dying.
I wanted to give him privacy to express anything he might want to say to her, so I excused myself to complete some charting. I was speaking with the evening supervisor when Mr. Wells lunged out of the room and announced, “She's stopped breathing!”
I entered the room and saw that Penny had died. I don't know if Mr. Wells ever spoke to her.
Placing my hand on his arm, I said, “You did it. You saw this through with her.”
Through tears, he smiled and nodded, then abruptly turned away and left.
I could've reminded him that there was no rush to leave. But for him now, there was no reason to stay.
Joy Ufema pioneered the role of death-and-dying specialist at Harrisburg (Pa.) Hospital in 1973. She's currently clinical specialist at Upper Chesapeake Medical Center in Bel Air, Md., and at Harford Memorial Hospital in Havre de Grace, Md.