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I'm caring for a 34-year-old woman who's comatose and ventilatordependent following a massive stroke. Both the intensivist and neurologist say she'll never recover and recommend terminal weaning, but the patient's mother won't accept this. Yesterday, she brought in her aunt, an older woman who's confined to a wheelchair after surviving a stroke. My patient's mother is convinced that the patient has an even better chance for "recovery" because she's so much younger. How can I help her come to terms with this tragedy?-C.P., PA.
It's quite telling that she had to bring "living proof" to the bedside to emphasize how hopeful she is. She not only doesn't believe the physicians, but she also doesn't trust them.
Learning more about the family history can help you earn their trust. I was asked to see Patrick, 38, who was in a similar medical condition following a stroke. Mechanical ventilation and numerous other interventions barely kept him stable. As I listened to his family's story, I learned that 3 days before his stroke, Patrick had been a pallbearer for his favorite nephew who'd been killed in a motorcycle accident. When staff suggested removing Patrick from life support, the family became distraught. They adored Patrick and weren't prepared to "lose him too!!" Their history with death-sudden death- was simply too fresh.
Meeting with the attending physician, the intensivist, and Patrick's nurse, I replayed the family history. We agreed on a plan of care that would support him for several more days. None of us would suggest terminal weaning but we'd answer truthfully when asked about his condition.
With this plan in place, the family became less defensive and the mood around the bed was calmer. Instead of butting heads with the family, the staff asked them about Patrick's personality and what was meaningful to him. Slowly, a feeling of trust started to build.
After 4 days, Patrick's mother said to me, "He's not getting any better, is he?"
I replied, "No, and I'm so terribly sorry."
I thought at first she'd ask us to withdraw life support, but she never did and I never knew why. Patrick died after 2 weeks of cooling blankets, vasopressors, and antibiotics.
It seems to me that like Patrick's family, your patient's family can't let go. But when she dies, her family will still need comfort and support. Take this time to earn their confidence so you can be there for them.
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