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.

Posted on June 16, 2014 at 3:44 pm 11

On Skinny-Dipping, S.O. Weight Gain, and Walk[ing] Away [From] Renee

Just wanted to say about Renee, as a soon-to-be psychiatrist: we don't make these diagnoses lightly (or quickly), but she sounds like she has Borderline Personality Disorder. This is sadly more common than one could wish in our society, and the advice given here makes a lot of sense. I'd suggest also, though, recommending that she seek some professional help, because there's a fairly effective treatment called Dialectical Behavior Therapy for BPD people. It involves recognizing that one's emotions in reaction to events are improper, and changing one's behaviors accordingly. Good luck with everything!

Posted on August 26, 2012 at 12:59 pm 1

On 'Pin Picks: The Fifth Estate

Can I just say - after a 13hr work day full of miserable people being more miserable because I had to make them miserable to do my job, and 2hrs of finding over 20 maggots (I am roughly *this* close to bursting out in tears because they are gross, my skin is crawling, and I still have to kill them) on my walls due to cornstarch gone bad - seeing a post about favorite books that is composed *entirely* of books that I love has been the only spot of light in an otherwise terrible, horrible, no good, very bad day. Thank you. Just, thank you.

Posted on July 16, 2012 at 11:01 pm 2