My mother, age 93, recently suffered a serious stroke. She was transferred to a big-city hospital that specializes in stroke treatment, where a highly qualified and brilliant, to put it mildly, doctor removed a clot from her brain. I’m grateful that people like him exist.
So far, so good.
During the ensuing week, I spoke to two different doctors by phone. These doctors were handling her post-intervention care.
The first doctor asked me all about heroic or extreme measures, such as whether I wanted them to perform full CPR on my mother if her heart stopped. He also asked me to consider whether my mother should have a ventilator, should that be required for her breathing.
I considered all that and gave some tentative answers.
Until two weeks ago, my mother was active. She gives music lessons, and is paid for it. Until two years ago, she conducted a choir. She’s an avid reader, and the last book she read was a biography of Haydn. I’d given her a recording of Haydn’s twelve London symphonies for Christmas, so she was interested in telling me about the biography.
I spoke to the second doctor a couple days later. She, the doctor, had taken over my mother’s case.
The doctor said that she understood that my mother had had some memory problems. Right, I’m thinking, like she couldn’t remember some actor’s name in some movie she saw. About as severe memory problems as I myself have, which is to say hardly any.
Your mother is 93, she said, old. Maybe she shouldn’t be resuscitated if her heart stops. Also, think about what you want to do if she doesn’t improve.
It took a day or so for all of this to sink in.
It was starting to seem like they wanted to throw my mother onto the discard pile, because of her age.
The next day, I called the doctor, left a message, and told her I wished to speak to her. She didn’t return my call.
That night, it hit me. I needed to do something, what I didn’t know, but with my suspicions about what they were thinking at the hospital, I had to do something. I called the nursing station and began asking some tough questions, like did they have my mother’s medical records, who was the doctor in charge at the moment, what doctor would be responding to a medical emergency, and so on. I told them that I was unhappy with my mother’s treatment.
No sooner had I put the phone down than the second doctor called. I guess the word was out that I was an unhappy customer.
I told the doctor that the only message I was getting was that we should let my mother die. She said that she was sorry that I got that impression, as if it were all my fault. Just a matter of getting wrong impressions.
I responded that I expected full enthusiasm in my mother’s treatment and that I didn’t think that she was getting that. That she was not ready for the discard pile, and that I very much resented their implications that she was. The doctor and the hospital are of course being paid piles of cash for her treatment, and I expect them to earn it – though I didn’t say this.
The doctor was flustered. She, like most doctors, is not used to anyone questioning them. She filled me in on a lot of the details of the treatment, after I insisted on hearing them. Before I hung up the phone, I was given assurances that they would be doing everything in their power to bring my mother back to normal.
My mother is almost ready to be discharged from the hospital, but just a few days ago I thought maybe she was going to die. I certainly got the feeling that those in charge of her care would have been very much OK with that.
I’m writing this because the same situation could happen to anyone. Don’t let doctors browbeat or convince you that the best course is doing nothing, or even death, if you don’t think that’s the case. It’s not their decision, it’s yours and that of the hospitalized person.
We hear a lot these days about end-of-life care, but the assumption being made is that someone is truly at the end of his or her life. That is not always the case. Just because someone is old and has a difficult illness, that does not mean that they should be just allowed to die.
Postscript: Each time I visited my mother in the hospital, she was groggy and wanted to sleep. Well, I got a call from a hospital pharmacist today, asking if I had information about one of my mother’s medications. One of them is a med she takes for a relatively minor disorder, but which she always said made her very groggy. It turns out some doctor had ordered her a dose of this med that was three times greater than her usual dose. This was probably the cause of her sleepiness and grogginess in the hospital. The pharmacist said that she would make an immediate change in her dosage.
Update: When I went to visit my mother, she wasn’t eating much, because she felt bad and nothing appealed to her. Almost worse, the stuff they were trying to feed her consisted of things like applesauce and cranberry juice. I don’t think that’s exactly optimal for someone in critical care who won’t/can’t eat. So I went back the next day armed with whey protein and fed my mother, and strongly suggested to the nurse that she give her more after I left. My sister did the same next day. In her coming recovery, she’ll be drinking a lot more of that, along with (probably) n-acetylcysteine, vitamin C, omega-3, possibly tocotrienols, etc. I’ve yet to figure it out exactly.
What happens when you see the doctor