medical ethics – My Good Wolf

Artistically altered photo of moon, clouds hanging low over New Mexican wetlands.

PROLOGUE:
While trying to stay afloat the summer heat waves, Doctor Rheumy #5 (number 6, if you count JustSeeANeurologist Guy) declared this here Lupine Lady an Anomaly of the Medical variety and referred Our Strangeness to the Mayo Clinic in Phoenix, Arizona. And I began composing the following. Eventually, the Good People of You Should Not Leave That Out in This Climate of All Places decided against our rendezvous. Nonetheless, change was afoot. (And is now a-neck!) Details on Turning the Corner coming soon, including Not a Miracle Healing by most standards, and Embracing Life after once again having a sudden sit-down with Death takes over a year, a ragtag village, fairy godmother’s wheelchair, and a very special dog named Draymond.

Z: Welcome to Better You Than Us!

A: Oh, hey — hello!

Z: How may we serve you? [Z hands menu to patron A]

A: Oh, um, okay. Yeah… [A speaks while perusing menu.] It’s just that I — Wow, you have that!? Sorry! I apologize. It’s just a really impressive menu! But, I think maybe an order was called in for me?

Z: No need for apologies! Everybody gets overwhelmed when they first step in here. They get confused. Grow lightheaded. Start crying. Faint. Or, some just get really angry. I am so glad you are not one of those angry ones. Uh … or are you?

A: No, not generally angry. Generation removed from free-floating rage. I’m more of a non-squeaky wheel type, trying in my Middle Ages to identify how and when to properly squeak.

Z: Excellent! My name is Zqwjj and I’ll be your waitstaff-helper-guide-person.

A: I’m Auuiy’o, person in need of wait-guidan— or, um, help. I need help. Obviously.

Z: All right! First things first. [Z checks electronic tablet.] We do have a third-party takeout order for you. Still needing insurance review and blood sacrifice, however.

A: Excuse me?!

Z: An Out of the Order (Nary) order of WhatIsWrongWithThisLadyPerson in a thick substrate of Gotta Be (Bloody) Rare was called in for you by Dr. TrulyGivesAShit.

A: I guess that’s what you call the pricey, intense, out-of-state, out-of-network, diagnostic work over— or, uh, workup, absent any and all guarantees for success?

Z: A week’s worth of poking, prodding, visualizing, repeating tests in all the ways, except this time with an air of self-righteousness and importance like you have never known and a very dry sense of … pretty much everything.

A: Surely, I’ll be granted the honor of paying for all that out of pocket, too — with my luck. While basking in the glory of the Sixth Circle of Hell!

Z: Oh … um …?! [Z worriedly checks tablet.] Says here your referral is to the Phoenix, Arizona clinic.

A: As I said, Sixth Circle; nicest one. You don’t offer a workup like that here, do you?

Z: Oh, no, no, no! However, we do cater the often long and soul-crushing waiting periods. You could start with our popular You Call That Accessible? crudités with I’m So Confused I Could Cry! dipping sauces.

A: That sounds … interesting.

Z: Are you being patronizing? The kind of patronizing a patron is not meant to be?

A: Sorry! It’s just … I, uh … I’m just not that excited about the whole Rising from the Ashes and Haboobs intensive deal right now. Not like I was.

Z: Ah. So, hold the Mayo?!

A: Yes, please.

Z: Sweet! Never had the opportunity to say that before! Professionally, I mean. [Z checks tablet.] Hmm… I see you have a long history of trauma and depression, and a complex medical profile, multiple autoimmune diseases (one rare), neurodivergent, lack of family support — lack of family, really —

A: Meaning?

Z: The Mayo may well hold itself.

A: What?!

Z: Even though there’s considerable evidence associating trauma, particularly ACEs (adverse childhood events), with autoimmune diseases — plus the fact that (worsening) depression is understandably common among those with autoimmune diseases — Mayo gets freaked out, if you will, by ongoing depression in cases like yours.

A: Anomalous rheumatology cases?

Z: Uh huh. Sure.

A: Rheumatological and apparently related conditions that overwhelmingly affect women and are therefore historically understudied, narrowly defined, and the sufferers maligned?

Z: As you said, “paternalistic.”

A: Did I? So … in cases of confusing, inconsistent test results and findings, blame the witches, oops, women as hysterical/borderline/whatever? Definitely do not find fault with the limits of current medical understanding?

Z: You’ve been misjudged before.

A: Last month I was told I was an entire medical practice’s one and only red flag. 1 out of 675. My occasional need for one particular type of legal medication is a stain on their otherwise spotless reputation.

Z: Ouch.

A: Been their patient for 9 years.

Z: Ah. May I suggest our Stir the Pot starter? Good for breaking out of stagnation.

A: No. Thanks. Actually, I think I’m ready to order my main course of action, now that Mayo’s off the table.

Z: Never good to leave the Mayo out on the table. [Z readies tablet for A’s order.] Now, what would you like?

A: [A reads from menu] Okay, I’d like an order of General Improvement, please, with greater ease of movement, no vertigo, clarity of mind, more stamina, normal digestive functioning, and significant reduction in pain.

Z: Well, I like the confidence, but …

A: Oh! And, an Abatement of Fear. On the side. [A closes menu.]

Z: [Tablet beeps and clicks briefly in Z’s hands.] Ah, yes, there are some, shall we say, compatibility issues with your current condition and that ask. Unless you want to start tithing? [Z looks at A who shows disapproval in no uncertain terms.] That’ll be a NO. Well, I’m sorry to say you’ve confused our General Improvement offering with our Full Remission special. But, from what I see here, I think an unassuming portion of General Improvement is a very good choice for you at this time.

A: Okay. What comes with that?

Z: You get your choice of greater ease of movement, reduced vertigo, and sporadic clarity of mind — OR — increased stamina, normal digestive function with rare, epic failures for no discernible reasons, and dizziness, no vertigo. Instead of reduction in pain, both choices come with better pain management. Served on a panorama of changing seasons or layered with an ever-evolving sense of peace with a series of devastating losses.

A: I see. Well, they’re both tempting, but I’ll go with the ease of movement/clarity of mind option with better pain management, layered with sense of peace stuff. And may I still have a side of Abatement of Fear?

Z: Yes, great choice! What flavor of Fear Abatement would you like? Milquetoast? Vague? Distinct? BlackWoman? HolyShit? Psychopath?

A: Distinct, please.

Z: Very nice. Now, how about a starter? OurPieInTheSkyHighHopes are popular.

A: No, thank you. Had it. That mix of sticky, sweet promise followed by enduring, bitter emptiness does not agree with me at all!

Z: Oh. [Z consults tablet.] Oh, right! My apologies! Of course, … That starter is not recommended for persons with Lupus.

A: Yup. Makes sense.

Z: For the Chronically Lupine, especially when ordering from our limited optimism menus, Hope Slivers and Cloud Linings, we usually recommend our Relativity Disclaimer starter, served with a delightful Cliché Blocker salsa.

A: Tell me about that.

Z: Our Relativity Disclaimer enhances the idiosyncratic nature of your main course, in this case, General Improvement. It’s all about how you feel now and not next week or last year. It’s not about you compared to someone else or somebody else’s idea of you.

A: Should I take that personally?

Z: Absolutely! It’s a bespoke savory starter. The Cliché Blocker salsa ranges from a mild, passive-aggressive, guess you mean well, to a hot, offensive, burn it all the fuck down. Medium is a spicy, assertive, be real or shut up.

A: Spicy, it is!

Z: Excellent! And for dessert? May I suggest a modest serving of our house specialty, Self-Acceptance, topped off with our renowned self-esteem boost, Is This Self-Love?

A: Oooh, I’ve always wanted to try that! But, I’ve heard it’s very rich.

Z: Oh, no, not really. You’ll be pleasantly surprised at how well Self-Acceptance complements General Improvement! Admittedly, Self-Acceptance can be difficult to digest, especially in combination with selections from our Stagnation and Decline menus. But for the disabled, especially the dynamically disabled like yourself, Self-Acceptance is often described as light and refreshing. Also fleeting, for many. You could probably indulge daily, if you wanted. Best part: Just save whatever you can’t finish for another time. It never goes bad.

A: Self-Acceptance never goes bad? No matter what?!

Z: Think about it.

A: What about the folks who claim it can have an enduring aftertaste?

Z: Consider the source.

A: Privileged, healthy, able-bodied people who perceive chronic illness and disability as threats to their worldview? Oh …

Z: So, that’s an unassuming order of General Improvement, with greater ease of movement, decreased vertigo, and sporadic clarity of mind, plus better pain management. For your side, a distinct Abatement of Fear. For starter, Relativity Disclaimer with spicy Cliché Blocker. And for dessert, Self-Acceptance, with a self-esteem boost of Is This Self-Love? Anything else?

A: Hold the Mayo.

Z: Done. Expires 6 months after issued. If properly stored, that is. Just FYI.

A: Noted.

Z: So, proceed?

A: Yes, let’s move on. Thank you!

Z: My pleasure! And soon, yours, too!

Hey! Shouldn’t you tell me where? ‘Cause I don’t know!

Underlying Conditions Lady Rants: I kvetch; therefore I is!

Content Note: My born of the pandemic alter ego, Underlying Conditions Lady, is unapologetically political and spicy. She speaks the hodge podge vernacular of my life: Caucasoid, Jewish American raised by Germans and an African American, living in New (shiny!) Mexico. Educated. Lower middle class at my luckiest. You’ve been warned.

And here we are, back again to where we started, only worse? 9 months and we have birthed what exactly? I love surrealism as an art form, but I have to say, I’m not a fan of it in public health!

When was it that I became Underlying Conditions Lady? When did I start truly fearing for my life? (Which is a big shift for me, I must say. I’ll save that for a later discussion.) Already in February there were the pronouncements, the risk categorizations: the elderly, diabetics, those with chronic respiratory diseases, cancer, cardiovascular disease, other underlying conditions.

This year would have been a really good time to educate about the difference between risk and cause and how those play out in disease. But, nah. Instead it was the usual who will give us the best return on our investment. Who has the stronger immune system and who not only gets but actually deserves modern medicine’s resources to help the worthy immune system hosts keep living their superior lives.

There is no such thing as a strong immune system. There, I said it. (I propose flexible. Agile, adaptable immune system is what you want. Yes, another topic for a later date!)

But an immune system can most def be compromised! And it don’t come cheap! HIV/AIDS, MS, ALS, SLE — but a few of the expensive abbreviations that will turn an immune system astray, if not turn it to the dark side of the force altogether. And I mean expensive in all the ways!

Underlying Conditions … I feel sure they really want(ed) to say preexisting conditions, to use the cost-benefit language of insurance. Your health in reference to when you started paying into their bottom line as opposed to, say, the context of your life. Around the so-called civilized world, people with Underlying Conditions sick with COVID-19 were denied ventilators and other potentially life-saving measures so that “healthy” people sick with COVID-19 could benefit. That they should live and we die was the difficult but ethical decision, as borne out by statistics. Or rather, the power brokers’ interpretation of the data. The odds of survival. For how long. Future productivity – in all the ways. And good old Quality Of Life, not only quantified, but monetized.

If I catch this thing, I ain’t got no chance.

It had been building for some time, the recognition of my relatively new status in my country as a disabled person. Now in 2020 it shines like a blinding beacon: I am well and truly marginalized!

In the spring I had the briefest of arguments on Twitter about the ethics of ventilator rationing. I could feel the abject horror of my opponent at the suggestion of first-come, first-served. But don’t all lives matter, Babycakes? Yes, that means you might get left out. Yes, you who have been deemed superior. This is “all [people] created equal” in action, Honey Shnoogums! Feels like Scheiße to be treated as if your life isn’t worth saving, doesn’t it? For how ever many years you may have left. At whatever quality others assign to it. Regardless of whatever metric you hold dear. What you’ve contributed to society to now. Your potential. How well you are loved and by whom.

Meanwhile, ethics demand we work to increase resources and decrease need. But we are stuck in this system that can’t quite shake its feudal roots. The many, the people on whom the economy truly relies, are the necessary foundation as a whole, but are expendable individually. Caught between a rock and a hard place, the Administration decided to deny the rock and act as if the dead bodies stacked up underneath them could prop them up, eventually getting them clear of the situation.

I do not apologize for the graphic nature of that metaphor.

Like so many nameless, faceless — but still masked — others, Underlying Conditions Lady has essentially been in quarantine since mid-March. There were a couple-three months when it seemed I might have a chance, when at least my state of New Mexico could maybe spare a ventilator or other limited and pricey measures for such as me. But no more. Again we are stretched to the breaking point. Medical providers are forced into the role of heroes, instead of people doing their jobs with adequate resources. Care is being rationed. And among so many other things, bodies are piling up — quite literally in some places. (Not to worry, we have inmates moving them. For a whole $2/day! With near adequate PPE, even! So not quite slave labor …)

T S Eliot proclaimed April to be the cruelest month. As that’s my birth month, I have some issues with that pronouncement. (My mother did an awesome impression of the guy reading The Wasteland. Just thought you should know.) November is feeling like the most surreal month, with November 2020 topping the charts. The Virus Dominator actively plans the continuation of his reign —claiming his pink slip was lost in the mail, which doesn’t exist because it did not work as he designed it to not work — and there are people being treated for COVID-19 in hospital, simultaneously denying they have COVID and demanding better treatment for COVID. (I have thoughts on how this denial might come to be. Yeah, that’s right. What we got here is yet another topic for another time.)

And so, in the words of my friend, the late, great Gurubhai Khalsa Singh, I’ll leave it there for today. Until next time, I remain yours in autoimmunity, Underlying Conditions Lady

Tag: medical ethics

Hold the Mayo🚩🚩🚩🚩

Pandemicon: The worth of (some) human life

Underlying Conditions Lady Rants: I kvetch; therefore I is!