July 24, 2009

An illustration on the subject of health care reform

Posted in Feminism, Health care at 5:00 pm by The Lizard Queen

I was getting caught up on the blogs yesterday and came across Christie’s story of her mother’s battle to get adequate care during her recent struggle with cancer (with an update here).  I defy anyone to read that first post and afterward claim that our health care system doesn’t need a massive overhaul.

I think there’s more to it than that, though; I think perhaps it’s a story that indicates the need for a sea change in society, not just in the health care industry.  It’s a story the likes of which I’ve heard before, not to that extreme, but there are certainly similar elements: a woman of a certain age (or older) is not taken seriously when she complains of severe pain, and after entirely too much time goes by, it’s finally determined that the source of the pain is metastatic cancer.  (Obviously such experiences, at least insofar as one’s pain not being taken seriously goes, are not limited to older women suffering from cancer, but like I said, I’ve heard that particular tale all too often.)  It comes back to what I would argue is one of the essential elements of feminism (or perhaps even progressivism in general): trusting women’s (or poor people’s, or People of Color’s, or Queer people’s, etc.) experiences, and their perceptions thereof.  There seems to be a paternalistic mindset here: “I know better than you what you’re going through, and I am going to trust that knowledge over your assertions.”  What causes such a mindset?  Perhaps more importantly: what can we do to change it?

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1 Comment »

  1. DavidD said,

    “Defy”, you say? OK, I’ve thought twice about leaving this comment, but I think it’s worth it. Your comment about paternalism is really out of line here. I didn’t read Christie’s story closely enough to be sure if she had a quote in there that was paternalistic, but I didn’t see one, even about switching oncologists, which is a routine question in group practice, and the answer is usually “no”, for several good, practical reasons, none of them paternalistic. I started reading that story in full sympathy with her, but the assumptions and judgments she was making as her story progressed pissed me off too much to read every word. Yes, pain can be horrible, missed diagnoses can be infuriating, whether from physicians or car mechanics, while jumping to conclusions is rarely as bad, but can’t we try to do our best at all those things?

    My experience lets me picture what happened here, and I doubt paternalism was a factor, even if someone did have a paternalistic attitude at some point. Delayed diagnosis happens all the time in medicine, and in general it has nothing to do with paternalism. It’s about health care workers trying to handle problems and move on. Once a diagnosis has been hung on a patient, that patient has received a label that sticks with them, as labels do for many social systems, and after that it’s not the patient that’s being treated as much as whatever diagnoses he or she carries.

    This is not a bad thing. It hurts people all the time. It’s hurt me, but how would you design a system that doesn’t have that feature? There needs to be labels, then routines that are applied to those labels. The trick is realizing when some label is inaccurate, when the patient is saying things that aren’t routine, has findings on exam that don’t fit the label, when one can see from the paperwork that some previous evaluation just wasn’t right, whether due to errors of commission or omission. This sort of reassessment can’t go on in every patient encounter. There has to be time to evaluate how the patient is doing with the routine. That can take all the time there is, for the sake of the patient. The realization that there’s something wrong about a label is somewhat haphazard, as it requires a provider noticing that something doesn’t fit, which will vary on how good a day the provider is having, one’s training, one having seen some diagnosis enough to know what it should be like. Studies that suggest gender, race or other attributes of the patient are important to that process are difficult, as conditions can vary according to gender, race, etc., so are differences due to the disease or the provider? With a disease like fibromyalgia, my experience is that males with fibromyalgia are treated as badly as females. Everything I’ve seen of that tells me the problem is closed-minded doctors, not sexist doctors, a closed-mindedness that isn’t paternalism, but because doctors, like all human beings, doubt the existence of things they don’t understand.

    Do you remember overhearing Jim Healy on the radio from your childhood in Orange County? He’d punctuate his show with sound bites that fit some story he was discussing. There was one that I think was from Tommy Lasorda, “THIS JOB IS NOT THAT FUCKING EASY!” I suppose it was correct of me to never repeat that in medicine, but it would have been accurate.

    Now in my entire medical career I never was led to realizing the need for a reassessment by an actual red flag popping up, never. I understand that patients and their families think that persistent symptoms mean that something is wrong, especially when speaking with 20-20 hindsight. It may or may not. Christie is upset that her mother was given ibuprofen as an analgesic, yet I bet it was given as an anti-inflammatory to try to fix her costochondritis. How long is that supposed to take? Well, it can be quite variable. If a patient continues to have the sort of tenderness on exam that is virtually diagnostic of costochondritis, that patient needs more anti-inflammatories, not morphine, which would let the patient injure their ribs even more by not feeling the pain. Complete analgesia isn’t necessarily a good thing. Persistent symptoms may just need more of the same routine treatment.

    Did Christie’s mother have costochondritis, post-mastectomy syndrome, and metastases? Patients and families often assume that the last diagnosis is right and all previous ones are wrong, but that’s often not the case, and the reason for outrage is very different if the diagnoses are all correct. No one can tell from Christie’s story what the reality is. What were the characteristics of her mother’s pain? What was the exam like? Very importantly, when was the last bone scan and/or X-rays she had? Just because metastases turn up at the end of this story doesn’t mean they were causing the pain at the beginning.

    Would you draw a conclusion about an issue in science without an expert looking at the data? Why do you make such a narrow conclusion here about what seems to be the problem? If you have a story to tell about paternalism, tell it, but is it really paternalism or are there other probabilities? Are you assuming this story is the same as that story?

    I’ve had several patients who turned out to have metastases I didn’t find at first. I remember a white middle-aged man who had some sort of physical occupation. His orthopedist had him see me to be sure he just had the trapezius strain he seemed to have. His description of his pain and his exam seemed to me to be a perfect fit for a strained trapezius, a very common condition. So off to physical therapy he went. Only he wasn’t getting better, so his orthopedist eventually x-rayed his scapula, and there was a tumor. Who knew, he must have had some kind of pain that made him hold his trapezius strangely, thereby straining it in the course of his activities. That’s the only time I ever saw that. If I had taken 15 minutes to carefully palpate away from where he was having pain when I saw him, I might have found a little tenderness to make me suspicious, or not. Having not done that I’ll never know. I didn’t start doing that routinely just because it cost this man some weeks of pain and delay in finding his primary tumor. Any physician learns that there is no practical way to be perfect. Being less than perfect as a physician causes people to suffer more than they might have. What does that mean to me? When I heard about this man’s tumor, it might have been one of the times in medicine when I said, “Ah, shit!” That can mean guilt, remorse for whatever the patient has to endure for not making the diagnosis earlier, sympathy for the patient being sicker than it seemed, fear of being sued, fear of some family member of the patient being even more obnoxious. No matter what one learns from those, “Ah, shit!” moments, though, they don’t make anyone perfect.

    Does that make me an evil person, someone who discriminates against white middle-aged men? No, I care about everyone, have empathy for everyone. If Satan wants me to help some suffering he has, I’ll do what I can. Suffering deserves that. Care is not earned by social status. I don’t know if everyone in medicine would go that far, but even providers who really like to make money are somewhat in that direction.

    You have sympathy for women, but judge health care providers, some of whom are women, as if they are heartless beings who practice telepathy and ignore their patient’s assertions. Gee, an ATM is more caring. Funny, I didn’t read of anything being ignored. Now here’s a problem that seems greater than health care.

    I think there needs to be universal health care, with costs held down so the system doesn’t explode. I’m not sure how many people can tolerate the sort of efficiencies I encounter getting my care through Kaiser without exploding like Christie has. Time will tell, unless politics continues to prevent that. Just reading Christie’s story, I’d bet against Kaiser being her kind of place. That’s not about paternalism. Of course, you never know how well the alternative would work unless you somehow get the chance to do everything all over again.

    This problem with sympathy does not have such a clear solution. It seems natural that human beings care more about people like themselves and not those bad people over there. I’m not sure how many people would admit it, but I suspect many people are quite happy with feeling that way. It’s useful to have scapegoats. But what do I want to do about that? That’s the right question, whether or not there is a “we” to feel the same way as I do. First, I want to understand better. Jumping to conclusions is very bad for that.

    People who only get easily diagnosed illnesses may never appreciate how alone one can feel as your body betrays you with pain and dysfunction that you never realized were possible, and no one fixes you. They even want to do things that you’re certain will make you worse. There can be paternalism in that, for patients of either gender, but I think it’s mostly because there still are plenty of situations where doctors don’t understand the disease, for which they want to say the patient is bad, rather than their making a judgment about who that patient is otherwise, like gender or race. That’s what I’ve seen from both sides of the medical system.

    Wait a minute, was I supposed to have perfect medical care because I’m a white male? Damn, I’ve been cheated. “WHO GOOFED, I’VE GOT TO KNOW!” Howard Cossell said that once, complaining about something that disappointed him, on an open microphone. Everything is so open today.


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