“Are you going to leave me?” my ninety-year-old patient asks me during our home visit. I was summoned because she’s been pressing the call button on her wrist every hour. An overworked nurse in her assisted living sent an exasperated fax, mentioning that all vital signs are stable, no physical symptoms, but the patient complains of “being uncomfortable.” Anxiety is a diagnosis of exclusion I’ve come to exclude.
Her vitals are normal – again. Other than her usual frailty – underweight, word-finding difficulty, short term memory loss – she seems at baseline now. But three days ago she had extremely low blood pressure with high heart rate and a sensation of palpitations and dizziness.
Most likely this was an episode of atrial fibrillation with rapid ventricular response. She keeps having these episodes despite her anti-arrhythmic medication. Each time, the abnormal heart rhythm spontaneously converts to normal rhythm with no intervention. But there’s always a chance that one time it might not. I ask, “Are you worried about your health?”
She nods. “A friend of mine had a heart attack in the dining hall on Friday, and I don’t know if they’re coming back.”
The overworked caregiver arrives again, hope flashing in her irises. “Are you the primary care?”
“Yes, I got your fax. She’s anxious, especially about her neighbor who went to the hospital on Friday, wanting to know if they’re okay.”
“Unfortunately, I can’t give that information.”
“Right, HIPAA. But she’s concerned about her friend so maybe you can let her know if the person is coming back?”
“I can’t give that information.”
I turn back to my patient. “Are you worried the same thing could happen to you?”
She nods. “I don’t want to go to the hospital. I don’t want to die there alone.”
We have our umpteenth goals of care conversation. It’s clear she wants to enroll in hospice care so that a hospice nurse can come keep her comfortable if her health suddenly declines. She has decided this twice before, and each time one of her children has later convinced her by phone to overturn the decision. Once more, I support her and tell her I’ll make the referral.
I call her children, who don’t attend her visits. They don’t pick up. I leave voicemails and send a secure online message to let them know her choice. My heartache relents slightly with the small hope that this smart, sensitive, wise woman will at least have a hospice nurse beside her at the end of her life.
Sara Lynne Wright
Mountain View, California