By demac on $3 Million for 7 Weeks
Thank you for telling this story. I can only imagine how painful this time must have been for you, and how painful it is for you still.
I have been on both sides of this situation. My grandmother, who helped raise me, died of inevitably-fatal glioblastoma, a brain cancer; when it was discovered, they predicted she had only months to live, though she died in weeks. The doctors told us that radiation might help her with keeping her mental state intact for a little longer, and she wanted to make it through to the new year a few months away, so she went through a course of radiation at a university hospital, which was excruciatingly painful - and scary for a woman who had never learned to read or speak English. We all decided shortly after starting the course that it wasn't worth it and stopped. She died weeks later, either on New Year's Eve or on New Year's Day - no one actually knows, because we discovered her death a few hours into the new year. We all like to think she made it into that next year, though.
It was an ugly death, as she had lost most of her bowel and bladder control, and had just defecated on herself on the way to the bathroom a few hours before. The burns on her head from the radiation were still visible at the funeral. I don't think I've ever been so angry and hurt at the same time.
And yet, a decade later, I am a doctor who has taken care of many terminal cancer patients. I can say that every one has stayed with me in one way or another, and I think that's true of all doctors; even if the names have left us, we still remember things like favorite desserts (which we buy for them personally from outside the hospital, because there's no brownie like Rosie's) or faces (eyes, smiles, dimples). And we remember family members, especially the ones who break our hearts with their crying, because all we want to do is cry too. (And sometimes we do.) But we have too many other patients to take care of, too many tests to order, too many labs to analyze.
I've cried and hugged family members, and I worry about adding my pain to theirs. But I do feel that it might be a good thing that they can see how much I care about this person that they love, that I'm not just a cog in the machine or a faceless representative of death.
I've taken care of many people who had little time left, and I have to say, at least from my experience, we try as hard as we can not to give false hope. (If for no other reason than hope has, in studies, shown no effect on survival rates or time to death - and because we wouldn't want doctors taking care of us to give us false hope.) We will tell people how unlikely treatments are to help them. I have told people that we couldn't help them multiple times, and each time is excruciatingly painful, because we all went into medicine to help people and having to tell them we can't and they will suffer because we can't is the worst thing to have to do.
The problem is that there are many, many times when we just don't know what will happen in the next few months or even the next few weeks - because, as far as modern medicine has gotten us, we're not God and all we have is 20/20 hindsight, not foresight. I promise you that, if we could, I would never - for a million dollars, for even another day with my own grandmother - put someone through the pain of chemotherapy if we could see beforehand that it wouldn't help, or that it would harm more than it helped at the end of life. And I think most doctors would agree.
There are some people who don't want to know if a treatment's likely to help or choose to try anyway, even if we ask in different ways, even if we disagree with their choices to pursue treatment. And, because at the end of life the most important thing we can give someone is their freedom to live what remains of their life as they choose, we will give someone chemotherapy if they want to try.
A lot of times, it is because, like my grandmother, they have some date they want to make it to. Or because they can't imagine going out without a fight. Or because they feel that they might be that one in a million that will beat the odds (though we try to explain the statistics as well as we can). We do our best to encourage hospice (preferably home hospice services, so people can be as comfortable as possible, at home with family and in familiar surroundings, when they pass). Almost all my colleagues agree that, with a terminal diagnosis, we wouldn't bother with treatment - we'd quit our jobs and go find a nice beach. And we tell our patients that when they ask us, and we will try to persuade people if we feel they're making a clear-cut bad decision. But unfortunately, a lot of times it's not that clear-cut.
It sounds like you're still angry with the doctor you spoke to on the phone, and towards the university hospital and hospital system he was at. I cannot speak to their missteps or mistakes, and I hate - HATE - that you had to deal with medical bills that are astronomical, and accompany a choice that only made the quality of your partner's end of life worse. And that you had to deal with them so soon, when he had just passed and your grief was raw and all-encompassing.
But I can say that hospitals are paid by insurance by the admission (at least in the state I live in), and the longer a patient stays or the more things that are done to that patient, the less overall money the hospital makes because the hospital will pay for the treatment regardless of the payment. The bill a patient's family gets at the end of an admission has little to do with what the hospital actually gets from the insurance company for services (and thus, little to do with what the services actually cost in terms of man-hours or wholesale cost of equipment). And doctors are not paid by the service while a patient is inpatient, and I don't know any doctor who would give an outpatient chemotherapy just to boost their income.
The other thing is that, though you didn't mention if your partner was in a clinical study or not at the end of his life, but (perhaps sadly, as they can help) most people are not and the hospital has no incentive to study him. Additionally, as a matter of ethics we would never keep people in the hospital or treat them against their prior wishes - that's why the drop-out rate in studies, especially for terminal cancer, tend to be relatively high. There is an ethics committee involved with every study, and that kind of behavior would be a very, VERY big issue.
When I've been that doctor at the end of a hospital stay, the doctor who's said, "Thank you for fighting with us," I've meant it the way that I think the doctor you wrote about meant it: thank you for helping us give it our best shot possible. We don't always agree that it should have been done, but we take our lead from what the patient wants.
And I've been that doctor who choked up on the phone, because if we could have known what would happen, we would have made different decisions and saved someone a lot of pain. But we make our decisions based on the best information we have available, and based on what a patient wants; we live with our own pain, too, that we cannot save everyone and that we may, in fact, cause harm in trying to help. It hurts every time that happens because all any doctor, from the time they were little to the time they take the Hippocratic Oath, has ever wanted to do is help. With my grandmother, even though I was a ball of rage when she died, I eventually realized that.
I am so, so sorry for your loss. I don't want to diminish your grief by addressing your anger towards these doctors, but I wanted to tell you how much doctors care and try to do their best for their patients.
By mindymise on How To Do Pull-Ups
@chevyvan Yep, that's a great place to start -- with the "negatives." Doing lots of those will certainly help. Another thing I didn't try, but which a strength trainer recommended, is using one of those stretchy bands as an assist -- one end looped around the bar, your knee hooked through the other end. It allows you to move more freely in space w/o putting you on the overly tracked route provided by the pull-up machine. Which, by the way, I don't think is ALL bad ... it can be a good place to start, but it's also easy to not really challenge yourself while using it. Plus you don't get that whole-body learning thing.
By missedconnections on The Single Woman Need Not Be Eternally Panic-Stricken: An Interview With Sara Eckel
This reminder came in at just the right time. I just got out of a relationship and I'm staring 32 in the face. As if that's not enough, one of my friends recently got married and is doing that, "Oh, it will happen for you too, you just have to believe" thing. Yes, I believe. I believe that you are really annoying and smug.
By Emby on Friday Open Thread
So, I've been offered a position at San Diego State University. And I think I'm going to take it.
yeah, it's so hard to fathom how you can share all these experiences that you think are so special with your one special person and then they can turn right around and get that from someone else, without even missing a beat. sigghhh...i did what jinxie said though this weekend and was really good to myself. i even tried to flirt with someone! it was awkward! i'm...not quite ready. ha.
hey, we are the same kind of. solidarity hug. he totally turned off when i really needed him! wtf was that about, right? it's okay, we get our breath back, we treat ourselves right, we try again later. life!
@iceberg I no longer have grandmothers (or, sadly, my mother) but this reminds me of a time some years ago when my mom, her sister (my aunt) and I spent an afternoon with my great Aunt Winnie, my grandmother's sister, who was in her late 90s.
She regaled us with stories of how she and my grandma came from County Sligo to the US on a boat. On impulse, they decided to go all the way to Michigan, instead of disembarking in Canada as planned, because of some fun people on the boat.
Technically, they were illegal immigrants and a fellow they met at the Gaelic League turned them in (somehow they worked it out and stayed). But I vividly remember her saying, in her still-thick brogue, still deeply annoyed after many decades, "I'd never trust a Kerry man after that!"
Related: Saturday I am going to my husband's grandmother's 100th birthday party...
@iceberg I basically interviewed my grandma every night for a week one summer. We were both staying at my uncle & aunt's, and every night after dinner just my gma & I would stay the table with our hot chocolate and ginger snaps, and she would tell me about being separated from her sisters in Scotland during WWII when they were all sent out to the country, or how the manager at a fast food place she worked at when her kids were young was coming on to her, so she "belted him!" And then got fired.
I should have recorded it, or written everything down. But it still means so much to me. I miss you, Betty!
I think my favorite part of this is how blase she is about everything, during a time when feminism was a Big Deal. She's just like, "Yeah, I figured I would do whatever seemed like a good idea to me at the time, and be a generally excellent person, and enjoy whatever turns my life took. Worked out pretty good."
"But what about other people's expectations?"
" . . . I don't think I understand the question."
I aspire to be this lady in my life.
Feeling: The bittersweet sadness that occurs several months after you break up with a good, but ultimately not good enough partner, and are enjoying the lightness of casual sex a bit too much, and you realize you don't miss the ex nearly as much as you think you should, and maybe not at all.
How to eat: Thick, dark coffee, with lots of sugar, sweet and gritty, like the liason with your caller from last night. Paired with a brownie from the coffee shop on your street.
By Shara on Friday Open Thread
@chevyvan Adrift is hard, but it gets easier. It'll take time, and it will certainly suck for a while, but keep reminding yourself that in the long term, this is the right thing. I've been feeling adrift for two years, since my divorce, but it doesn't necessarily mean I'm unhappy. It's going to be a different future than you had planned, but there are definitely good times ahead. Oh, and wine.