The scream
An elderly woman had had a
cardiac arrest and was resuscitated long after a lack of oxygen had permanently damaged her brain. Her daughter remained at her side day in and
day out in the Medical ICU, keeping watch on a hopeless situation.
Many staff had encouraged her to go out and get some fresh air, to take
care of herself… but she was compelled to stay with her mom 24-7 for reasons I will
never know.
I spent some time gazing at the patient’s face – it was delicate
and quite beautiful, with flowing white hair framing fair, soft skin. I wondered what she was like when she was
herself, if she had a gentle disposition, or a fiery wit. I wondered if she had loved her husband, and
if she had had a happy life… I wondered why her daughter was clinging to her,
barely able to leave her for bathroom breaks.
The situation continued for a few weeks – I was a medical
student, and wrote some very bland and unenlightening notes about the patient
each day, describing her unchanging condition.
I felt sad as I watched the daughter slowly come to realize that her mom
was already gone.
One day the daughter looked at me and said, “I think I’ll go
out for a bite.” I smiled, knowing that
this was a turning point for her, and gave her a hug. “I’ll watch her for you,” I said.
As it happened, the patient was on the “house service” –
assigned to the teaching attending of the month. She didn’t have her own doctor, so she was
followed by a team of rotating residents and attendings. The new team started this day, and were
somewhat unfamiliar with her case. I
dutifully updated them on the history and events over the past few weeks.
As I stood there with the team, rounding on the patient –
they noted that her lungs were becoming harder and harder to ventilate. “ARDS,” they said. “She’s going to code any time now.”
And then the unthinkable happened. The new attending, who was a bit of a cowboy,
said “let’s just end this madness. Turn
off the ventilator, it’s done.” The
residents looked at one another – one protested, “I don’t think we should do
that.”
“She’s already gone – look at her! Her oxygen is dropping, she has no pupillary reflexes,
she’s on maximum pressors…”
“But wait,” I said, “Her daughter would want to be here.”
“It’s better for her not to have to go through this,” he
said. And he turned off the machine.
I gasped. “What will
we tell her daughter when she comes back from lunch?”
Annoyed by my persistence he snapped, “Tell her she coded
when she was out.”
Thirty minutes later the daughter came back to the ICU. As she walked towards her mom’s bed, the
residents scattered. Frightened, I
approached her. She could see from the
look on my face that something bad had happened.
“She’s gone,” I stumbled… “it just happened after you left.”
She looked at me as if I had convicted her of the crime of
abandonment. At that moment, her
greatest fear of leaving her mom’s side had come true – she wasn’t with her
when she died. She ran into the room,
saw that the machines were off and all was quiet. She fell to the floor and screamed.
That scream still haunts me to this day.
This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
Dr. Jones,
What a nicely written, powerful reminder that our emotions so often have nothing to do with the medical reality. To bad your attending didn’t have a clue about that. Thanks for sharing this poignant patient story!
Thank you, Dr. Smith. Part of what concerns me about this story is that care and emotional sensitivity are sometimes lost when those in charge of the patient don’t know them or their family circumstances well. That’s why I believe in the concept of the medical home – every patient should have a physician who stays with them, knows them well, and can coordinate their care. This woman didn’t have such an advocate, and I was the only one who truly understood the implications of the medical decision on the life of the patient’s daughter… simply because I had been around for a few weeks, observing. I also believe that a family’s feelings should be taken into account wherever possible. Medical decisions don’t happen in a vacuum.
We need more humanism in medicine. Meeting a patient for the first time or knowing a patient for a long time is not an excuse. We need more humanism in medicine. Thanks for sharing this Val.
Hello – I read your entry entitled ‘The Scream’. It ‘s hard to believe a doctor would not be sensitive to the desire for a daughter to be present when her mother died.
It’s not that easy even in the best of times to ensure that the family is present when death takes place. I had to let goof that feeling of guilt when I left my father’s room for the night as he was dying, telling him I was exhausted and would be back tomorrow.
As soon as I got home, I received the call that he had died. It’s impossible to be all-knowing in that kind of circumstance. I see that now.
I wanted to inform other adult children of frail parents what might be ahead and was able to do that in my work.
I am a hospice volunteer and a documentary filmmaker. I’ve produced a documentary about the last days of an 89 year old woman who is being cared for by her daughter. It is called 203 Days.
It just won First Place Film 2007 for the National Hospice and Palliative Care Organization.
You can view it at the following University of Connecticut Health Center website:
http://fitsweb.uchc.edu/days
I’m very gratified to say 203 Days is being watched and used by medical educators around
the country in their training sessions and classes on palliative care,
end of life decisions and hospice.
Now I’m working on getting The AIDS Chronicles – Here to Represent out there, too.
It is a feature-length documentary about the social and cultural impact of HIV/AIDS on the urban African American community.
You can find out more about it on my website
http://www.bbarash.com
then click on ‘New Release’ at the top of the page.