I'll freely admit that I could be self-serving in this. I didn't call into question the legitimacy of what I was seeking, only the response I got. Without dragging you through the whole process I'll say that I spent a year getting educated as best i could and 5-6 months gathering information on four adjunct therapies that I wanted her oncologist to consider adding to her existing plan. The two primary ones were this one (IVC) and the use of metformin to help manage her slowly elevating hyperglycemia. I wasn't forceful, I didn't 'sneak anything in' and I tried to avoid any outright conflict because my wife loved her doc, and I do believe her doc loved her.
As far as me being wrong, it's entirely possible, but I don't believe we're seeing my argument the same way. I do believe you care, and I do believe my wife's doc cared for her. Hell her doc cried more in our meetings than my wife did. But I care too, and while I'm not a doctor I'm also not a fucking moron. I'm a reasonably intelligent person that is tremendously invested in ensuring my wife gets the best care possible and that we maximize her quality and quantity of life as best we can. I easily have a thousand hours of crash course research and self-education into the underlying molecular genetics and microbiology...which granted pales in comparison to what MDs have, but it's not mommy blogs. I also educated myself on the various historical treatment approaches for cancer, why they went out of practice, present day standard of care and reviewed applicability and inclusion/exclusion criteria for hundreds of clinical trials around the world. I spoke with about a dozen principal investigators and 30-40 trial coordinators from MD Anderson, MSK, Johns Hopkins, Cleveland Clinic and a couple hospitals in the Netherlands and Germany. I had conversations with numerous drug and device manufacturers and actually got access to a few off-label drugs through Care Oncology (never used). I brought everything I thought would help my wife to her doctor and got zero consideration in return. No explanation, no real research into what I was suggesting, just 'not standard of care' and handwavey concerns around potential negative impacts to her therapy.
Why did I get this result? It's entirely possible she seriously considered what I asked for, maybe she spent a whole week doing her own follow-up research on my suggestions and came to the conclusion that we arrived at, but fuck me if it didn't feel like anything more than a dismissal with prejudice.
So I'm trying to find a way to reconcile that behavior with what I do feel was her care for my wife. And the only thing I can come up with is that the system she is operating under doesn't allow for her to take any risks...regardless of the patients willingness to do so. It's also possible that she's just scared that she's already on a razor's edge and anything weird coming in will not work in my wife's favor. Goes back to my fear statement, but in a different way. That said, sometimes you have to leap to survive, my wife's doc never leaped, and my wife did not survive.
About two years ago I started punctuating stressful work meetings with 'come on folks, we're not saving lives here'. It never occurred to me before to be honest, but i started out of respect of the decisions that I saw doctors making every day in my wife's care and the care of others. It's not an enviable position in my eyes, kind of hard to win when you're in oncology, and I do appreciate the fact that people sign up for it every day. I just want to get some of these bugs out of the system and empower people to have some agency in their own care. Maybe it doesn't work out, but at least they have the option to try.
I find it odd that you're focussing on making people understand that many in your profession care. It has been my experience that most health care providers… care.
Let's suppose that health care is like any other profession - let's say it's just like programming, something most people understand deeply on here.
We all know programmers who care and programmers who don't care. The best programmers I know are the ones who care, are competent, but also able and willing to have their understanding of the subject matter challenged. They're not married to their craft - they keep the right distance to excel at it.
The worst ones I know are those who care just as much, but are utterly incompetent. The ones who are so deep into it that they literally cannot see any other way. To them, everything is clear and obvious. They're willing, enthusiastic and overjoyed to be working. And they're wrong. There is not a codebase they touch where every hour of work they put in produces ten or twenty times as much work for others, later on.
I think caring about your craft is a force multiplier and it's a necessary one. You don't want a mindless drone who doesn't give a damn about either your health or your codebase, no matter how competent they are. To care means to have a vital part of you engaged in such a way that all that you could bring to the table does get there. But it has to be lightly held and accepting of being challenged.
You care. I get it. But that doesn't mean everybody cares. (Again, really struggling here to not respond in kind with examples of people I have met who clearly did not care.) And even if everybody did care - some people are actually more useless the more they care.
But - it's up to the customers (or patients) to navigate that landscape. There has to be a mutual understanding that all parties involved are just human and can make mistakes. Our understanding of health care moves forward and things that are standard care today had to be invented, sometimes just a few years ago, often replacing things that used to be just as firmly a standard, before. Challenging what is accepted practice should be a healthy part of this interaction.
There's a limit to how many people care. There is a limit to how useful it is that people care. There is a limit to how effective you can be for your patients when you walk around with a chip on your shoulder, thinking that people just don't get how much you care.
Self-serving because, naturally, the reason that your requests are met with poor regard isn't because there's something wrong with the request, but because something is wrong with the person receiving it. But that's okay; that's the nature of human opinion and subjectivity. You can accuse me of the same, of course - oh, and will. I'm sure this thread will go from Zero to Malpractice in 6.4 seconds.
But wrong:
You're going to ignore this sentence, but dear god, do I want to burn it into your eyeballs, and the eyeballs of every person reading this: I care. The vast majority of my colleagues care. The vast majority of nurses care. The vast majority of everyone you meet in the hospital cares. They've been there, either themselves, or with a loved one; have been there in the past, or are there now, whether or not they disclose that to you. They give a shit.
When we work with someone that is suffering and dying, we care. We hurt. And when, god help us, there's a chance we can actually help and reduce that suffering, be it for the patient or their family, and they take that away from us, we hate them a little. We hate them for making us care, and making us watch and experience and share this suffering when maybe we didn't have to.
When a patient says, "You know, it's really important to us that we explore (dubious option X)", it puts up our radar for "oh fuck, this is going to suck." And the more the patient goes down that road, the more we know they're going to veer away from care that's at least have some evidentiary basis to support it working, the more we know we have to go down the fucking drain with them.
Not that long ago we had a lady on our IM service who'd had a promptly diagnosed, treatable, resectable local cancer... 18 months ago. 18 months of quack bullshit later, she came in to us because of the severity of her constipation, because that cancer arose near her intestines, and had now matted and infiltrated them. She and her family were proof to all conversations regarding reality: she just needed IV nutrition of the appropriate sort, because the problem wasn't that the cancer had utterly invaded her GI tract, it was that she needed the right vitamins! Our nutritionist couldn't come up with the miracle combination of IV nutrition for her, because she kept deteriorating (of course she did.) The family wouldn't allow painkillers, because those worsen constipation, and of course, they refused to acknowledge this constipation was because of her rampant cancer they opted to leave untreated, not because of some magic nutritional deficiency. Which means no opiates - because any minute now we're going to cure that constipation with the magic vitamin.
So we had to listen to her scream, then moan, then quietly writhe. For days. While the family insisted we just find the right vitamin. Until the family insisted we try spoon-feeding her, because there just isn't the right IV feed for her. We refused. They fed her themselves. This lady who hasn't passed stool in two-odd weeks promptly vomited, aspirated, and within a few hours was in the ICU for a chemical pneumonitis.
We got to watch her die. We got to visit every-day. We got to try to gladhand the family and give them bland cliches because we didn't want them to hurt more. We didn't want to rub it in that they killed their mother.
But we got to watch it. In detail. I had the dismal, terrible pleasure of pronouncing her dead.
I'm not afraid of the terribly scary management of a vitamin C infusion in a terminal patient. I'm hurt. I'm pained. I suffer every time I have to watch preventable misery and death because a patient and/or their loved one's are busy chasing Google MD's endless font of nonsense. And because I'm not a goddamned robot, I dislike suffering, and those people that force me through more.
Surprisingly, doctors take a lot of solace in "we did what we could for her. We made it as painless as possible. We gave her as many days as we could." That means a lot. And when it's taken away from us, holy shit, do we hate it.
This was pretty stream-of-consciousness. I'm not editing it, and I'm not coming back to it, so if anyone bothers responding, know it's not for me.