Doctor Power, Chronic Illness & Transsexual Medical Theory

[eredien]

Quite a few people, seishonagon and rm among them, have pointed out interesting things about this letter from a doctor to patients dealing with chronic illnesses.

I wanted to more widely spread an idea which I had talked about earlier in someone else's friends-locked post, because I think it bears thinking about:

A lot of people are angry, and I think rightfully so, about some assumptions made in the letter: namely, the idea that patients with chronic illness may make doctors and the medical system uncomfortable for a number of reasons, but that the patient should try and make the doctor comfortable, even if that process makes the patient uncomfortable, so they can get better treatment.

I think that this idea--so often hidden in discussions of chronic mental or physical illness--comes right out into the open when discussing the Benjamin Standards of Care for transsexual persons seeking gender-confirming surgeries and/or hormone therapy.

I think it's interesting to see that the often-unspoken systematic methods that therapists, doctors and hospital systems may use to deal with persons with chronic illness dovetail so neatly, and so nearly, with the explicitly written-out standards and systematic methods that therapists, doctors, and hospital systems may, and in fact must often, use to deal with transsexual people.

I'm not trying to conflate transsexuality with sufferers of chronic illnesses, or vice versa. But I do think that:
a.) persons with chronic illness may find discussions of how transsexual people have navigated an explicit doctor/patient power imbalance (one where the patient is the one expected to make the doctor comfortable, often at expense of patient comfort, in order to receive proper treatment) instructive and/or useful in
navigating a much less explicit or articulated, yet similar, doctor/patient power imbalance paradigm.

b.) Transsexual people may find discussions of how those with chronic illnesses deal with the un-codifed nature of the doctor/patient power imbalance interesting and useful: I know there are a lot of dicussions on whether the Standards of Care are necessary or useful, or harmful; there is a lot of anger and constant calls for repeal and revision. I have found that those discussions tend to center around a few things: how much explicitly codified standards help and/or harm those seeking GTS, how much explicitly codified standards help and/or harm those in the medical professions, how much those explicitly codified standards ultimately rest on personal judgement calls made by medical professionals, and how those medical professionals act as gateways to treatment or bars from treatment, depending on how comfortable the transsexual person in question makes them.

c.) Those persons who are both transsexual and have chronic illnesses would, I hope, also find said discussions useful.

d.) Allies of transsexual people and of those with chronic illness should not use one as a metaphor for the other--doing that is both inaccurate and inconsiderate. But thinking about the different ways in which the medical establishment hides its uncomfortability with difference by telling the patient that it is their job to make the doctor more comfortable in order to get better care hopefully will help allies be better and more understanding allies, especially when/if interacting with medical professionals at a friend's request or on their behalf.

e.) All morning I have been thinking, "especially when it comes to the medical profession and the medical system, it looks like a lot of people treat transsexual identity explicitly like an illness; it also looks like those with chronic illness have doctor/patient power dynamics/expectations of the idea that the patient should make the doctor comfortable in order to get treatment placed upon them in some of the same ways that transsexual people do, without the benefit/drawback of those power dynamics being explicitly written and encoded. I don't see other people writing about this, so I bet I should."

Comments

[nightengalesknd.livejournal.com]

That's an interesting summation and upon seeing the guidlines you posted, I agree with your parallels. I've been getting a victim-blaming feel from the letter, although I have other issues with thinking of people with chronic illness as victims. But certainly, the effect is simililar in that it places the onus on the person in the relationship with less power while enabling the system that maintains the other person's power.

My thoughts, as both a patient and physician, have been posted in several places, and I am trying to get my language right before posting it to his letter directly. Here's a repost of my most recent version, posted this AM to

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That's an interesting summation and upon seeing the guidlines you posted, I agree with your parallels. I've been getting a victim-blaming feel from the letter, although I have other issues with thinking of people with chronic illness as victims. But certainly, the effect is simililar in that it places the onus on the person in the relationship with less power while enabling the system that maintains the other person's power.

My thoughts, as both a patient and physician, have been posted in several places, and I am trying to get my language right before posting it to his letter directly. Here's a repost of my most recent version, posted this AM to <a href="http://www.butyoudontlooksick.com/boards/search.php?search_id=newposts>"But You Don't Look Sick."</a>


"I'm a doctor when I'm not a spoonie - except, of course, that I'm always a doctor and always a spoonie. I find his letter extremely problematic in that it acknowledges the difficulty physicians traditionally have with patients with chronic, complex conditions while placing the burden of responsibility for this difficulty on the patient rather than addressing the system which enables it. I hesitate to use the term "victim blaming" only because I dislike the model of patient as victim, but the effect is similar to that in blaming the person with the minority experience for the mistreatment they recieve from the majority.

I've posted my thoughts on several other websites - appologies to anyone seeing this multiple times."

"The discomfort doctors experience when caring for patients with disability - I don't know the chronic illness literature as well but I suspect it is similar - is well documented. There are classes taught to medical students in communicating with patients. However, these classes, even at best, tend to treat the patient as the "other" in the situation and rely on a helping model rather than a team approach model.

I have not found that most patients with chronic illness, or their families, see the physician as god-like. I have found they - we - are generally aware of their doctors humanity, and their doctor's discomfort with their care. To compensate, many have become extremely knowledgable about their individual conditions and about how the condition affects themselves as individuals. Many have learned to come to medical appointments armed with information, details of prior treatments, lists of questions. Some are adversarial or resentful due to prior maltreatment. Many physicians are uncomfortable with the informed patient. Many see the preparation as a challenge to their knowledge and authority.

It is not the job of the patient to make his or her doctor feel better. It is not the job of the patient to avoid making the doctor feel out of control. It is not the job of the patient to avoid scaring doctors.

Rather, it is the job of the doctor to learn to care for patients with complex, puzzling chronic conditions. It is the job of the doctor to learn to share control with the patient rather than need to be in control at all times. It is the job of the doctor to learn to respect the patient who comes in with knowledge and questions and ideas and to not feel threatened by patients who take that approach. It is even the job of the doctor to get a reasonable grasp on a situation without those years of prior knowledge of the patient, when circumstances require, such as in the ER, and to provide adequate and respectful care.

Instead of presuming to instruct his patients on how they should behave in a nice, non-threatening manner at all times, imagine if this doctor spent the time and energy to train his colleagues on how to better care for patients with chronic conditions. Imagine if he taught his colleagues to respect the patient who comes in with lists and questions. Imagine if he sent this letter to his colleagues and encouraged them to examine their own attitudes and misconceptions about chronic illness and disability and to educate themselves to provide better care. Just imagine."

[gaudior.livejournal.com]

Instead of presuming to instruct his patients on how they should behave in a nice, non-threatening manner at all times, imagine if this doctor spent the time and energy to train his colleagues on how to better care for patients with chronic conditions. Imagine if he taught his colleagues to respect the patient who comes in with lists and questions. Imagine if he sent this letter to his colleagues and encouraged them to examine their own attitudes and misconceptions about chronic illness and disability and to educate themselves to provide better care. Just imagine.

This. Very much this.

From the patient's perspective, I think it is useful to have the information: if your doctor is being a jerk, this is possibly why, and here is how you can get them to stop being as much of a jerk. But I would hate to see doctors see this letter and take it to mean, "See? It is because it is so hard for us that we act this way! It is perfectly natural, and there is nothing we can do about it!" rather than "Oh. Some of our assumptions are very problematic, and we'd better find some better ways of dealing with our feelings about the limits of our own competence!"

[navrins]

I read the letter you're referring to, but I haven't (and likely won't) read any commentary not appearing on my friends' page. So I may be repeating the obvious, or missing an obvious counter to what I'm saying. But anyway:

It seems to me that whether or not one acknowledges that doctors ought to treat patients with invisible diseases better, it's not unreasonable to suggest to patients ways they can get better care. While the patient does have less power in the relationship, the patient is also the one who cares the most about getting good treatment, and so the patient is going to be a lot more motivated to follow any advice on getting better treatment from all their doctors than most doctors will be to follow advice on giving better treatment to certain patients. It's not right for this to be so, but it probably is so, and the patients who need help shouldn't have to wait for the medical world to change before improving their own care.

I also find I'm a bit skeptical of the letter-writer's claim that difficult cases scare doctors. I don't know; I'm not a doctor and only about 5% of the way toward a somewhat similar profession, but I hope he's not speaking for a majority of doctors. If he is, that's a problem too.

[navrins]

Hm. Apologies if I am completely sidetracking your point, which it occurs to me belatedly I am probably doing. I read the thing this morning and have been thinking about it all day, and jumped on the chance to comment without really thinking hard enough about whether I was actually responding to what I was commenting on. Feel free to delete both my comments if you find them inappropriate.

[nightengalesknd.livejournal.com]

I have no data to back up the assertion that difficult cases "scare" doctors, although I do feel I have experienced this as both a patient and a health care provider. Physicians are trained to treat acute illness rather than chronic or disabling conditions, and are trained to "help" and pity patients rather than truly become partners in their care. Patient self-advocacy behaviors, such as bringing lists and information to the visit, are not well recieved by many doctors.

I do have data that about a quarter of doctors report feeling uncomfortable with patients who have cognitive disabilities and about 10% feel uncomfortable with patients who have physical disabilities. Patients who have physical or mental health impairments are more likely to be labeled "difficult." Student doctors in practice sessions with simulated patients spend less time in the room if the patient has a visible disability.

I don't believe that patients altering behavior to avoid scaring doctors is likely to improve care, and it is likely to continue the status quo.

[navrins]

Huh.

Student doctors, I'm not too surprised. Most people are uncomfortable around people with mental or physical disabilities, and it takes time to unlearn that discomfort. Student doctors should be working on that; I don't expect them to have succeeded yet. And I'm not too surprised that a doctor who deals with physical ailments would be uncomfortable with patients with cognitive disabilities. But I would expect that experienced doctors would rarely feel uncomfortable around physical disabilities (and experienced psych*ists would rarely feel uncomfortable around cognitive disabilities), and if that's not the case, then I'm surprised.

I don't know whether that particular writer's suggestions are correct, but I do know that as a patient it is less useful to me to hear, "Doctors should do things differently," than it is to hear, "Here's something you can do to help elicit the behavior you want from your doctor." The former may be more satisfying, but the latter (if it is good advice) actually helps me to do something to improve my personal situation.

[nightengalesknd.livejournal.com]

I likewise do not want to derail eredien's post but I will say my personal experience suggests that student doctors do not gain these skills by osmosis during their training but rather need to be taught, and the majority of their teachers share discomfort with patient self-advocasy and patients who present challenges outside the "mainstream" of an otherwise well patient with a single acute illness episode. For the most part, I was taught to pity and ridicule my patients with disabilities, not to see them as peers and partners in care.

All physicians who have patient care responsibilities, which only excludes those in pathology and radiology, are going to encounter patients with cognitive, mental and physical conditions. And there have been studies suggesting that many psychiatrists feel uncomfortable in patients who have cognitive impairment in addition to traditionally defined mental illness, and recieve little specific training about cognitive disabilities.

[zeeth_kyrah]

May I point folks at this post?