Knowing when to stop trying to save people is hard, especially when that’s how you’re trained, and innately wired. It’s been a frequent theme on this blog.
Movin Meat has a good post on the subject today (weeks ago, just found this in my drafts folder), and it’s remarkable for two reasons. First, it’s a well written account of doing the right thing, even though that’s much harder than the easy thing, and secondly, the power of convincing medical writing to influence the actions of physicians.
Movin Meat specifically cites thinking about the recent Atul Gawande piece in the New Yorker, which helped him make sure the option of how to die was presented to the patient and family. That’s good writing, and it’s something the world could use more of (as long as it’s not preachy, or gratuitously political).
The World Death Rate is steady at 100%. There’s nothing at all comforting, comfortable or holy about dying on the vent in the ICU. Talk with your family about what you do, and don’t want.
In September, Mom passed away in the ICU. She’d been battling a c diff infection off and on since the end of April. I say off and on because sometimes she’d test positive and sometimes negative. I doubt it ever went away.
She’d been in and out of hospitals, acute care and finally in a nursing home before the ICU.
I’m non-medical. I grew up believing that doctors can fix everything. Now middle-aged, I realize that medical science can’t fix everything and sometimes you end up with a chronic condition. I try to emphasize the importance of diet and exercise to my children to stave off health issues.
I wasn’t there when the initial consult in the ICU between my dad and the doctors took place. He says there were at least 12 doctors in the room with he and mom. Anyone wearing scrubs is a doctor in Dad’s eyes. Nurses should still be wearing the little hat thing that Dixie McCall wore on “Emergency!”
Mom’s body was shutting down. Fluids were building up in her chest. The mega-doses of lasix were producing milliliters of output. Her arms and legs were swelling. When I last saw her on Sunday afternoon, all she wanted was air. Her breathing was labored and difficult. She was uncomfortable and moving from side to side trying to find the right spot on the bed.
I wish one of the doctors would have explained to us the end was looming. I’ve not had their personal, up close experiences with death. I am a like a simple, innocent child. Even I was under the assumption that the infection had flared up again and the antibiotics would rein it under control shortly. I’d been down this road of flare up and control three times already.
On Tuesday morning, it was decided to install a catheter in Mom’s chest to start dialysis in the hopes of draining off fluid quickly. The surgery was delayed. The surgery took longer than expected. When she returned to the ICU room, she was intubated and the crash cart was called shortly afterward. Her death was called minutes later at 19:20.
I have wondered over the last few weeks if Mom would have wanted that last heroic effort to buy her a few more – what? – maybe hours.
My uncle passed away a few years ago. Arthritis destroyed his body in horrific ways. The medicines to treat him finally destroyed his liver. He was diagnosed with liver cancer. When he went into the hospital the last time, I had the privilege of being in the room when his cancer specialist came to deliver the news. He was simple and to the point. He said something along the lines of “Larry, we’ve talked several times about your treatment options. And, we’ve also discussed that at some point, we will have exhausted our medical options. I think you’re aware we’re at that point now. It’s been a privilege helping you and knowing you these past few years.” He said his good-byes and excused himself so we could be together as a family.
I write all this in the hopes that someone medical out there will read this. Please have the courage to have the heroic measures or comfortable death talk with your patients. We all die. How you handle the end of your patients’ lives can make all the difference to those left behind.