I’ve not been able to post here much in the last few weeks, because it’s been one of those times when multiple different causes of stress all rear up simultaneously. Of those, by far the worst was my maternal grandmother being terminally ill and, later, dying (and the aftermath of that, with the funeral and so forth).
I coped with that as well as possible — I loved my grandma, but we’d known it was coming for a while, and had been able to prepare. But it was still hard (though not, of course, as hard on me as on her, or on those relatives who were closer to her), and it was something we shouldn’t have had to go through, at least not yet.
You see, my grandma would quite likely be alive today were it not for the endemic classism and sexism within the medical profession.
She first developed breast cancer about… two years ago, I think. She had a mastectomy, and it got rid of the tumour. Her prognosis was pretty good. But then she went to see her consultant.
Now, my family are working class Liverpudlians. In accent, dress, and all the other myriad social signifiers, my grandma was very clearly lower-class. And she took along my sister with her, because she wanted someone to help her talk to the doctor. My sister also has a very strong accent — and she’s autistic, and like many autistic women has learned to pass by taking on the social signifiers of her class even more than most, while also having body language that doesn’t parse as “normal”.
How much of what followed was classism, how much sexism, and how much ableism, I don’t know, but I’m pretty sure all were involved.
The consultant explained the course of treatment that had been decided for my grandmother, and explained that this would have unpleasant side-effects.
My grandma was immediately suspicious, because the treatment had been decided *for* her, rather than *with* her. She asked what her other options were.
“There are no other options”.
“What happens if I don’t do this?”
Now my sister started asking questions.
“So, what are her actual odds if she *does* do this, compared to not doing it?”
“She’ll definitely live if she does, she’ll definitely die if she doesn’t.”
“No. I mean what are the actual probabilities? Given that this has bad side effects, she needs to know if it’s worth that.”
“99% she’ll be dead in one year if she doesn’t do this. 99% she’ll be alive if she does.” — said in a patronising, offhand, manner, clearly just pulling the numbers out of his arse.
“You just made those numbers up. There’s no way those are the actual numbers.”
“No I didn’t.”
“Where did you get them from then? What studies? Show us the actual evidence.”
“You wouldn’t understand it.”
“We need to know what the actual chances are.”
“I told you. 99%”
“Then tell us where you got that number from.”
After some more back and forth like this, the doctor googled something and pulled up a random scientific paper on his computer. He showed it to my sister. It had nothing to do with cancer or the treatments they were talking about, but he waved his hand at the screen and said “see? I told you you wouldn’t understand.”
In the end, my grandma decided not to get the treatment, because she knew the side-effects would definitely be bad, but had no idea — because the doctor wouldn’t tell her — what the chances were of it extending her life.
Now, as I also don’t know what the odds were — I don’t even know what the proposed treatment was — I don’t know for sure that it would have made a difference. But the point is, the consultant thought he did know. He clearly thought he had good reason to believe the treatment would be the best thing for her. By patronising her and my sister, and by lying to them both, he prevented her from doing what he thought was best for her. If he was right (and we must assume he was, absent further evidence), then my grandmother’s death is a direct consequence of his actions.
This isn’t the only time something like that happened, either. Last month, my grandmother was in hospital, on an oxygen tank and being given pain treatment. But she was still in agony.
My dad thought that the dose of opiate painkillers she was being given sounded low — he worked as a nurse for twenty years, and for much of that time ran an old people’s home, so he has a lot of experience with end-of-life treatments. He looked it up in the BNF (the standard guide to medication dosages) and found that that particular painkiller was listed as being acceptable to give in far, far, higher doses during end-of-life care.
My mum showed this to the doctors. The reply was “we’re not upping the dose, because she might get constipated.”
Because obviously your biggest concern, when you’re in the last weeks of life, unable to keep food down, unable to breathe without artificial assistance, and delirious from pain, is that you not get constipation.
This was eventually resolved by my uncle. He’s an academic, and much more experienced with dealing with middle-class professionals than most of my family (and he’s also a biochemist who specialises in cancer biochemistry, which probably helped). He made an angry phone call to the head of department, and that same day one of the senior consultants (who had previously been too important to bother coming and seeing actual patients) came down from his important person’s important office, spoke to my grandma for a minute, and then said “get this woman as much pain relief as she needs. She clearly needs far more than you’re giving her.”
He then turned to the family members there and said, almost grovelling and cringing to them, “could you please let Doctor Hickey know the problem has been resolved?”
That shouldn’t have been necessary. And while the problem was fixed for my own grandmother, I can’t help but thinking of all the other people in her situation. All the other elderly working-class Scouse women dying in agony that could have been relieved, if they’d just happened to have a son-in-law whose brother had the right middle-class elbows.
I’m shaking and in tears thinking about it. Not about my own grandma, whose death was eased as much as is medically possible, and who was allowed to have some quality of life right to the end because of that, but for the people like her who are suffering entirely preventably.
Working-class people, like people from other marginalised groups, have lives which mean they get ill more, die younger, and suffer more, than more privileged people. The very, very least that the medical profession could do would be to treat them [I say “them” here, because while I am also working class, I can code-switch well enough that I don’t worry about being marginalised in this way] equally, rather than adding to their problems.
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My condolences on the loss of your grandmother. Even though it was expected, I know it’s always a very sad thing when it happens.
Thanks. Yeah, it was pretty hard.
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Andrew, my condolences on the passing of your grandmother; I’m sure that she was a very special human being, if she was in any way related to the Hickey family. When my dad was in his final hours in the hospital (88 years old), the nurse ran tests on him while he lay in bed, completely unconscious, after we had already been notified by the doctor that he would not be regaining consciousness. In the U.K. it’s classism, but in my country (the U.S.A.) it’s being gouged out of as much money as is humanly possible, whether you have health insurance or not.
Thank you. And I’m sorry about your dad. The US system is utterly inhumane, and sadly ours is getting more, rather than less, like it :-/
A friend of mine would take along a medical translator to her meetings with the oncologist — it was her psychiatrist. She put the psychiatrist in the middle, asked him the questions, which he relayed in medicalese, and then got the answers’ translation from him too. I met her oncologist once, and couldn’t believe the way he talked — there was no way of telling why he was dispensing the information he chose to, what his motives were in saying certain things rather than others, and it was clear my friend was to follow the program being laid down for her — I don’t even know if the oncologist realized he was subtly discouraging her in order to make this happen. We learn our language skills on the job, mostly, and one senses in cancer wards a certain circling of the wagons, sometimes.
That consultant sounds like a BASTARD, however.