Why out-of-control costs matter

Complexity. From how you get insurance (THREE MORE DAYS FOR MARKETPLACE PLANS) to who the emergency department treats to the non-communicating EMRs that create a chorus of fax tones ringing out across this great nation of over-paying under-served… well it ends like this: envelopes.

Cramming up your mailbox. Every medical service, every brick and mortar facility, every radiologist in his/her darkened bedroom reading films in memory foam slippers, is going to send to a separate bill. And this is why you still have a checkbook. Because even within the same organization, let’s say a fictional system called ANOVA that I visit for one scan, get 3 bills (physicians group, facility, and radiologist), then I go again in 3 months for the exact same thing. None of my six account numbers will be the same. Cram that in your electronic bill pay.

Here, loves, are my preventative health costs since October. Cancer screenings, with no expensive imaging like CT/MRI. Just doc visits, PAP pathology, and a radiology bill for who knows what that is? $12? I’m leaving out my $400 surprise colposcopy. But, VACCINE PLUG: get your son/daughter an HPV vaccine and the his girl/she may never know the surprise cervical pinch of colposcopy. It is a terrible thing to surprise a woman with. (I was too old, to not a virgin at 26 when vaccines became available).

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Don’t feel bad for me. Maybe set me up one of those gofundmesoIcanaffordfollowupcancersurveillanceandhaveayearlypapsinceI’msexuallyactive. Not a big draw on that?

Alright then. Just pay attention as policy, which people seem to be more averse to than illness itself, is being made. Taxes (for a few) may be losing their place on that short list of inevitability, but mortality my loves, endures.

I’m sorry about what I did when I thought I was dying! (Happy 3 years cancer free)

Good news, everyone! I still don’t have cancer.

Depression almost never lifts all at once. I carried around a $600 CD of images of my messed up guts for 5 days, knowing that even though I couldn’t fully interpret them they spelled out my imminent death. Then my oncologist who I would literally go into battle for floats into the room in sparkling white coat with halo around his beatific face like some renaissance painting and makes the sign of the cross and anoints my forehead with oil and says “You are cancer free my child, go with god and I’ll see you in six months.” WELL THAT IS DEPRESSION LIFTING ALL AT ONCE.

Do you know how much I want to live? SO much. And I am sorry about all the sullen things I said and did over the course of the last 4-ish weeks. I wasn’t even a little aware that I was preparing myself for terrible news.

Family members: I’m sorry I totally turned my back on you. I withdrew from you, I didn’t answer your call, your text. Child, I am so so sorry I tried to squeeze about a decade of yelling at you (parenting) into 3 weeks. That was unfair. You are a gracious and forgiving small human and I don’t know what I ever did right to have gotten you.

Friends: Man, I’m sorry about picking fights. Sending bizarre missives in the middle of the night like, “my drugs are broken” and “how much money do you think is necessary to go die in a bus in Saskatchewan?” and “how do I start an LLC?” All I can say is being somehow even darker and colder than the person you befriended was my way of losing you before I had to eternally lose you. I’m real sorry. I like you so much and I want to see you more.

Body: I haven’t taken you to the pool or to yoga for a month because, let’s be honest, I was really mad at you. I didn’t feed you much either. Everybody talks about cancer like it’s a thing that comes in from the outside. But we know that it’s your cells. It’s this nuked out shell of an immune system to blame. Forgive me, somehow you persist and divide despite the daily prednisone nuking! You clump of little ATP-run miracles! You deserve much better. We’ll go swimming then sit in the municipal sauna with the old naked ladies and I’ll make pizza crust from scratch next time.

Hygiene and cleanliness: Let’s just be thankful for scrub service. Also, I know what that person in the Guinness Book of World Records with those fingernails that go curling on to the ground felt like in the first month of that endeavor. I get how that happens now. My days as a carbon-based life form are numbered. The human race won’t even be around long enough warrant mention in geological time. Why should I care about my nails? Well I cut and polished all 20 within an hour of getting home from the doctor. I did all the laundry. Because I am not going to die.

Thank god. Thank god. Thank you god. I’ll keep all those promises I made for at least the next 4 months.

Must Watch: Xeni Jardin and having cancer before the ACA

Health care is life. Losing your insurance because you need care is punishment for getting sick.

I know my fellow old timers in the health care business can remember a time when patients would ask, beg, plead to not be given a diagnosis (something necessary for billing in a fee-for-service system) for fear of losing their health insurance. Times when we had to cross our fingers and hope that insurance companies couldn’t find some byzantine path to link a new diagnosis to a pre-exisiting condition and leave the patient with the full tab. In the few short years since the protections of the ACA have been in place the relationship between health care providers and patients (the beneficiaries) and their insurers (the payers) has lost the vicious antagonism recalled by the fraud investigations Xeni Jardin went through.

Insurance companies as good capitalist participants had incentive to deny deny deny. With the regulatory protections of the Affordable Care Act they are doing what all good capitalist entities do–look for other ways to reduce costs. Anyone on the population health tip? Insurance companies are attempting to lower their costs by improving overall health of their subscribers. IMAGINE! You may have noticed a gym membership benefit. Money off your premiums for getting a check up? Maybe a nurse from your insurer has called you to discuss managing a chronic condition. It is very much still in the proof-of-concept stage, but people can we agree that incentives for healthy behavior are better than punishments for being sick? THANKS OBAMACARE.

Post Script: Does anyone remember the late ’90s movie The Rainmaker? You know, novice lawyer Matt Damon going for broke for a man dying from Leukemia, his family in bankruptcy, because his insurance company refused to pay for treatment. The way teenage me loved that movie was kinda prescient, huh. But I digress.

Losing the protections of the ACA=losing lives.

Valentine’s for broken hearts

There is this utterly sensible trend in health care where the providers of the highest acuity care seem to have the least first hand experience as patients. The first time a coworker commented “Sometimes I wish I’d been in the hospital so I’d know what having an IV placed felt like,” I was flabbergasted. Are there adult people that have avoided IV sticks? Yes, many. It makes sense that my colleagues are largely younger and healthier people, considering how tough the gig is on a body. Poor sleep habits, stress, inflexible schedules, repetitive back wrenching… it’s in the job description. But this lack of direct experience opens an even wider gap of understanding between provider and patient. They have no shared medical experiences. And medical experiences aren’t about the pain of the IV stick. It’s the subordination to your providers, a previously robust identity reduced to your name and birth date on your bracelet (plus fall risk meaning now you can’t even toilet yourself). How people cope with what we take away from them defines what kind of patient they appear to be.

So on this Valentine’s Day, Galentines for my feminist warriors, day of grumpiferous mourning for me, a tweet from Lucy Kalanithi reminded me to urge all health care people to read Paul Kalanithi’s When Breath Becomes Air. In this memoir Paul is able to recount in what feels like real time losing his identity as a promising neurosurgeon to cancer. His doctor self gives way and he becomes the patient. Being previously a young and healthy person, and falling victim to the trick all healthy people play on themselves (the way I am now is the way I will always be), his realization that his is terribly ill is heartbreaking. The chapter in which he discusses his scientific mind’s understanding of survival curves, trying to square the data with his individual, not-yet-a-statistic mortality, it rings so bitterly true.

Here is Lucy Kalanithi’s beautiful valentine to him. It speaks to living with loss. If you’re on twitter follow her post haste (@rocketgirlmd).

What Lucy says about grief and loss…blarg my heart. We have been a house in mourning for the past 14 months. My mother lost her true love and partner. I lost my father. I sometimes feel like I killed my father since it was my chest compressions that sent him out of this world, but that’s another post. If dad were here this February 14th I sure as shit would be sitting as his feet complaining about the quality of available suitors while he half listened until I wound myself down, then I’d get a “you’re fine sweetie girl”and a pat on the back and I would be fine. And he and mom would watch garbage TV and laugh at really stupid jokes and drink wine out of tumblers and genuinely enjoy one another.

In remembrance of the love between my parents I’m attaching my eulogy. All of us Crawfords were so lucky to get so very much of him.

So to bring it on back health care people of the world, depending on the statistics you go by we are somewhere between 60-80% likely to have someone’s loved one in our care as their life ends. Think about what it felt like to be Paul, what it feels like to be Lucy when someone asks to bring their baby into the ICU. Or tapes pictures all over the walls. Or changes their mind about end of life care 16 times. People often need guidance, and we can draw from training and experience to offer it. Maybe what has happened in your own life, or a book you read, is helpful. Keep that. Get rid of the rest. Like I said at the beginning: It’s a tough gig.

Cancer is expensive and price transparency is a little bit helpful.

I intend to triple with this piece: deets about the cost burden of cancer, a bit of personal history, and a plug for the ACA.

Cancer is an industry that for many reasons that make sense and some that are disgusting and controversial (but I’m not fighting that battle today) is full to bursting with money. Especially compared with other diseases having higher morbidity and mortality rates. But in America to die is to break our greatest taboo, so I find it unsurprising that we are willing to spend spend spend so much on a disease where it is routine to, in the same breath as it’s diagnosis, give survival statistics. Hard numbers on your own death will scare all the dollars out of your wallet.

And those dollars go to imaging, surgeries, pharma therapies, infusions, radiation therapies, specialists, and hospitalizations. In the initial months after I was diagnosed with stage 3 melanoma (survival odds 60% at 5 years if you must know) I had more scans than I could count. I didn’t even try to count the scans. In fact, sometimes I wasn’t even aware a scan was happening because I had fallen asleep in an MRI tube, the hammering no match for my fatigue. I was ending my second month of radiation when the bills started rolling in. I recall the total coming to around $15,000. And you want to hear something insane? Convinced I wouldn’t live very long and wanting to spare my husband the debt, I used my student loan money to cover the bill. Student loans that I knew would be discharged upon my death. Thinking and being ill don’t go together.

All of this is to say if I were capable of using the price transparency tools made available to patients by regulations of the Affordable Care Act I probably could have saved thousands. But at the time I didn’t even question the necessity of a scan, much less how much it would cost where. I deffered entirely to plans of the doctor, the NP, the scheduler. In hindsight this surprises me as I was at the time a nursing graduate student who previously managed her own healthcare like a total scrooge. Fear of death, fear of leaving a child orphaned, it dulls the shrewdness of the consumer.

So here we are almost three years post-diagnosis and I am, for the first time, feeling up to shopping for my scans. I am shocked at how much money I just about threw away for convenience of proximity and a communicating EMR. Top image is least expensive estimate, bottom most expensive.

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I’d cross the Wilson bridge for $1200 any day. I’m glad to have made the investment in time to save some cash–but I believe it is a relatively small number of health care consumers availing themselves of the service be it for reasons of urgency of care or force of habit.

When I listen to great policy minds like Austin Frakt or Aaron Carroll of Healthcare Triage they don’t talk about a massive rebuild of the American health system or some sort of copy paste of British National Health. They speak of the improvement of our health care system as the fixing of hundreds of problems potentially a handful at a time. Price transparency is one of these fixes. It feels small in the face of the so much waste and dysfunction, inequity and unconscionable suffering…but hey! I am about to save a thousand freaking dollars. That is not nothing. I recommend you look into doing the same.

Warming the engine/Thank god for Oliver Sacks

For a while now I’ve been scribbling notes and spending long hours before sleep and short minutes before getting out of bed figuring on how I will tell the story of my absence. Where I’ve been (literal and figurative).

I’m not consuming much fiction these days, but can slide through clinical tales like a hot knife through butter. So to warm me up a bit, and to remind you that I still think and breathe, I’ll share a passage from the late Oliver Sacks’ book The Man Who Mistook His Wife for a Hat (from the introduction, Losses):

…But it must be said from the outset that a disease is never a mere loss or excess–that there is always a reaction, on the part of the affected organism or individual, to restore, to replace, to compensate for and to preserve its identity, however strange the means may be: and to study or influence these means, no less than the primary insult to the nervous system, is an essential part of our role as physicians.

This is a perfect prologue. You know I had cancer. And that is the least interesting part of the story I wish to tell. The compensating, the strange and destructive means by which I strive and fail to preserve my identity is where the drama lies. And that, my friends, was completely overlooked by both me (RN) and all of my care providers.

Where is Oliver Sacks when you need him? In print I suppose. Thank god.

Poetry Monday

Saturday I had the pleasure of listening to Margaret Mohrmann give the keynote at the UVA’s End-of-Life conference. Blow. Me. Back. The weight of the subject matter and her nimble language. The stories steeped in years of experience ecclesiastical and medical. Is frank compassion a thing? I think it may be her thing. One of the two times she made me well up (for my patients, for my loved ones, for me, for my fellow RNs & MDs, for humanity):

A Blessing for a Friend on the Arrival of Illness
by John O’Donohue

Now is the time of dark invitation
beyond a frontier that you did not expect.
Abruptly your old life seems distant.
You barely noticed how each day opened
a path through fields never questioned
yet expected deep down to hold treasure.

Now your time on earth becomes full of threat.
Before your eyes your future shrinks.
You lived absorbed in the day to day so continuous
with everything around you that you could forget
you were separate.

Now this dark companion has come between you.
Distances have opened in your eyes.
You feel that against your will
A stranger has married your heart.
Nothing before has made you feel so isolated
and lost.

When the reverberations of shock subside in you,
may grace come to restore you to balance.
May it shape a new space in your heart
to embrace this illness as a teacher
who has come to open your life to new worlds.
May you find in yourself a courageous hospitality
towards what is difficult, painful and unknown.

May you use this illness as a lantern
to illuminate the new qualities that will emerge in you.
May your fragile harvesting of this slow light help you
release whatever has become false in you.
May you trust this light to clear a path
through all the fog of old unease and anxiety
until you feel a rising within you,
a tranquility profound enough to call the storm to stillness.

May you find the wisdom to listen to your illness,
ask it why it came,
why it chose your friendship,
where it wants to take you,
what it wants you to know,
what quality of space it wants to create in you,
what you need to learn to become more fully yourself,
that your presence may shine in the world.

May you keep faith with your body,
learning to see it as a holy sanctuary
which can bring this night wound
gradually towards the healing and freedom of dawn.

Cancer: The Emperor of All Maladies and My Cancer: The Wrecker of All Normalcy

Video: Cancer: The Emperor of All Maladies Trailer | Watch Cancer: The Emperor of All Maladies Online | PBS Video.

You’re all watching this, right? You’ve already watched it?

Good. I need to re-watch a time or two more before I give you my bullet points, but wow.

Hot off the press for my policy class about being a patient and looking at treatment options and statistics. No good choices yet.

The Fear & The Data

I’m the kind of patient who wants to, no insists, on knowing the numbers. When I was diagnosed with melanoma a little bit more than a year ago the sentence after “the tumor is malignant” was me asking “how deep.” I already had the tumor staging chart in front of me. That’s not true. It was dark, I was outside, and I had that thing memorized. My tumor was staged 2B, my stats are 60% survival at 5 years. I absolutely consent to a wide tumor excision and sentinel node excision. I am unable to undergo the recommended course of immunotherapy (12 month course) for adjuvant treatment that would have got me an additional 7% survival, due to my comorbid Lupus. I look for second and third and fourth opinions, and find a reputable oncologist with specific experience in my sub-type of melanoma who recommends adjuvant cutaneous radiation. The doc, my radiation oncologist, and I pull the best studies we can and make a good argument for radiation therapy in reducing recurrence of melanoma at the site (and more than 80% of melanomas of my subtype reoccur at the site) by 12-15%. SOLD! For $6,000 out-of-pocket, 6 weeks of my life, and 2 months of healing third degree burns and radiation toxicity. Steep. But fear is a powerful motivator. And fear of abandoning your young child? I mean I don’t have to tell you.

Would I have done the radiation for 5% reduced recurrence? I am aware that radiation can cause late malignancies. But REGRET. I could never forgive myself a lost chance to raise my child. Despite my lack of faith in integrity of studies in general, my non-surprise at aberrant results, and my belief that as a young person I may have more bounce back in me, I cling to the numbers with fear and with hope. Some people see themselves as the exception. I can’t help but see myself as the rule.

Making good news sad (it’s what I do) and a poem/incantation

I am cancer free, 1 year. A reprieve lasting who knows how long. Feeeeelings.

This week I was spared the ax and I saw it come down on strangers. Have I mentioned how odd it is to be consumed with concern for your own mortality when the study of mortality is consuming your days?

Borrowed from Micheal Swanberg, the only guru I’ll accept (if he’ll have me):

Let me respectfully remind you
Life and death are of supreme importance
Time swiftly passes by and opportunity is lost
Let us awaken
Awaken, take heed
This night your days are reduced by one
Do not squander your life.