
I don't share deeply personal stories on this blog. But I want to share this one because of the impact that it has had on me, being the family member of an ill patient rather than the physician.

My grandmother was the healthiest 92 year-old woman I knew. An avid shopper, she walked on the treadmill for 30 minutes every day and went out to dinner with her friends on Saturday night. She lived independently in her own apartment. She looked in on her 88 year-old little sister who lived down the hallway. Until last Thursday.
She was leaving the dining hall when she fell. She hit her head. She was confused. She was emergently taken to the nearby hospital. The CT scan showed "a little bleeding", I was told. Keep in mind that I'm in Los Angeles and my grandmother is in Michigan. She's waking up, my mom says.
The next morning, I'm told she has bleeding in her brainstem, but "they're still not sure" what is going on. But my grandmother was awake and alert, though she had a lot of bruising from the fall. My brother, who also lives in LA, and I booked a flight to leave that night.
The next morning, my brother and I were at my grandmother's side. I could barely recognize her, with the right side of her face drooping and bruised. She opened her left eye when I spoke to her and held her hand; she said my name. Then she said my brother's name.
Shortly after that, she recognized none of us. It became apparent that she was fading. Several doctors came in, none offering much explanation of what had occurred. But their optimism was disturbing. A brainstem bleed in an elderly woman who was clearly getting worse was very very bad. One doctor talked of the possibility of doing an invasive procedure called a transesophageal echocardiogram. The neurologist, when I asked him point blank what my grandmother's prognosis was (I had a pretty good idea, but wanted to hear his thoughts) said, "We'll see in a couple days."
I didn't feel like the doctors were realistic with us. I didn't appreciate the euphemisms and false hope. I wanted them to be more honest about what her prognosis was and not overly optimistic in fear of shocking us.
Then she had periods of apnea -- in other words, she would not breathe for up to forty seconds at a time. The ICU nurse, who took wonderful care of my grandmother, came in and asked what we wanted to do, did we want to consider having my grandmother put on a breathing machine. No, my mother said, my grandmother would not want that, and at that time, with none of her physicians there, we decided to pursue comfort care only -- no more invasive tests, no blood draws, accepting that this is a terminal process.
There were some terrific nurses who cared for my grandmother. But other caregivers were less than great. I overheard that my grandmother's primary physician considered more than two milligrams to be "way too much" morphine. She was grimacing in pain and needed more medicine. A nurse elsewhere refused to increase a morphine drip, insisting wrongly that the hospice physician would not permit more medication.
It's hard sometimes to be a caring family member and a doctor at the same time. The hospice nurse said to me when I was discussing my grandmother's medical status, "Be her granddaughter." But I couldn't just stand by idly and watch -- there were times when my knowledge as a physician led me to speak up. I requested morphine before my grandmother was moved from one bed to another, to cover the pain that the move would involve. When she started to have rattling with her breathing, I requested a scopolamine patch. When her mouth was dry and crusted, I asked the nursing staff to please swab her mouth. Would those things have been done for her comfort if I wasn't standing by? I'm not so sure.
Was I, a cardiologist, intimidating? Did my brother, the attorney, compound that? Perhaps.
My grandmother died in peace early on Tuesday morning. She was comfortable. Of course I am sad, but I know that she didn't linger in pain. She passed away surrounded by those who loved her.
From this experience, I feel more like I can empathize with family members of ill patients. I want to continue to be honest -- at times, I've feared that I'm too honest or too blunt, but that's what my family wanted, not false hope. And I hope I can better think about the details that matter in keeping patients comfortable.

My grandmother was the healthiest 92 year-old woman I knew. An avid shopper, she walked on the treadmill for 30 minutes every day and went out to dinner with her friends on Saturday night. She lived independently in her own apartment. She looked in on her 88 year-old little sister who lived down the hallway. Until last Thursday.
She was leaving the dining hall when she fell. She hit her head. She was confused. She was emergently taken to the nearby hospital. The CT scan showed "a little bleeding", I was told. Keep in mind that I'm in Los Angeles and my grandmother is in Michigan. She's waking up, my mom says.
The next morning, I'm told she has bleeding in her brainstem, but "they're still not sure" what is going on. But my grandmother was awake and alert, though she had a lot of bruising from the fall. My brother, who also lives in LA, and I booked a flight to leave that night.
The next morning, my brother and I were at my grandmother's side. I could barely recognize her, with the right side of her face drooping and bruised. She opened her left eye when I spoke to her and held her hand; she said my name. Then she said my brother's name.
Shortly after that, she recognized none of us. It became apparent that she was fading. Several doctors came in, none offering much explanation of what had occurred. But their optimism was disturbing. A brainstem bleed in an elderly woman who was clearly getting worse was very very bad. One doctor talked of the possibility of doing an invasive procedure called a transesophageal echocardiogram. The neurologist, when I asked him point blank what my grandmother's prognosis was (I had a pretty good idea, but wanted to hear his thoughts) said, "We'll see in a couple days."
I didn't feel like the doctors were realistic with us. I didn't appreciate the euphemisms and false hope. I wanted them to be more honest about what her prognosis was and not overly optimistic in fear of shocking us.
Then she had periods of apnea -- in other words, she would not breathe for up to forty seconds at a time. The ICU nurse, who took wonderful care of my grandmother, came in and asked what we wanted to do, did we want to consider having my grandmother put on a breathing machine. No, my mother said, my grandmother would not want that, and at that time, with none of her physicians there, we decided to pursue comfort care only -- no more invasive tests, no blood draws, accepting that this is a terminal process.
There were some terrific nurses who cared for my grandmother. But other caregivers were less than great. I overheard that my grandmother's primary physician considered more than two milligrams to be "way too much" morphine. She was grimacing in pain and needed more medicine. A nurse elsewhere refused to increase a morphine drip, insisting wrongly that the hospice physician would not permit more medication.
It's hard sometimes to be a caring family member and a doctor at the same time. The hospice nurse said to me when I was discussing my grandmother's medical status, "Be her granddaughter." But I couldn't just stand by idly and watch -- there were times when my knowledge as a physician led me to speak up. I requested morphine before my grandmother was moved from one bed to another, to cover the pain that the move would involve. When she started to have rattling with her breathing, I requested a scopolamine patch. When her mouth was dry and crusted, I asked the nursing staff to please swab her mouth. Would those things have been done for her comfort if I wasn't standing by? I'm not so sure.
Was I, a cardiologist, intimidating? Did my brother, the attorney, compound that? Perhaps.
My grandmother died in peace early on Tuesday morning. She was comfortable. Of course I am sad, but I know that she didn't linger in pain. She passed away surrounded by those who loved her.
From this experience, I feel more like I can empathize with family members of ill patients. I want to continue to be honest -- at times, I've feared that I'm too honest or too blunt, but that's what my family wanted, not false hope. And I hope I can better think about the details that matter in keeping patients comfortable.




