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.

Medicaid block grant HC Triage and a quiz.

So you’re an audio/visual learner. Maybe you prefer to watch Aaron Carroll talk about Medicaid block grants on Healthcare Triage. Five minutes to being smart enough to policy wrestle any date in the D.C. metro area this week. THERE WILL BE A QUIZ.

1.) What are some of the “perverse incentives” created by Medicaid’s current funding model? (HINT: think fee-for-service care). Does block granting address these incentives? Include direct and indirect implications for state budgets.

2.) If per-person spending has remained relatively flat, and Dr. Carroll is correct in saying that the increase in overall Medicaid spending comes from the increased number of enrollees, and enrollment eligibility is tied to the federal poverty level (as well as qualifying criteria such as being a child, a pregnant woman, or disabled) what can we assume about poverty in America? HINT: I really pointed you right at this one. You don’t need a hint.

Now go out there and get’em.

EXPLAINER: How Would Republican Plans for Medicaid Block Grants Actually Work? And what’s my problem?

 

There’s no magic in how Congress reduces spending under a block grant mechanism. It just says it will do so, and leaves the hard decisions to others. It’s possible that some states will come up with solutions we haven’t been able to see before, and find a way to reduce spending without causing problems. If they can’t, though, they will have to make do with less, make the hard choices and face the brunt of the blame.

This column is A++. Apparently, block grants are simple: states are given a set amount of money to sustain their Medicaid population. If their needs exceed that amount the state has to come up with the difference or make cuts: recipients, services, costs covered. States that rely on a higher percentage of federal dollars for Medicaid are more likely to come up short in this equation. Many of these states have things in common. They are poorer, health disparities greater, outcomes worse. The fear is that these states, already behind, will slip further if a gap in funding grew. It disconcerts me greatly that Americans are resigned to the great divides that exist among us in health measures and life expectancy. Block grants forewarn of further disengagement of rich from the poor, North from the South, urban from rural, one race from another. Our federal government and it’s protective policies and programs unite us, remind us that we are in fact one nation, interdependent.

Sometimes I pledge allegiance to bureaucracy. When nothing else will hold us equal, it comes in with it’s maddening and obstinate rules. It does.

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.

I got Obamacare 

No big story here. I got myself some Obamacare.

Except this is a life changing event for little-old lupus having me who in my early 20s could not imagine a day when I was not somebody’s full time employee and/or spouse. I feel like some dependent wife in the fifties who needed her husband’s signature to get money out of the bank–and now I’ve got my own account! I get to make my own choices and I get to pay for them. Jerks.

Since the age of 18, I’ve lived my life according to where I can find health insurance next. A pre-existing condition meant that if I did try to buy coverage prior to the ACA I would be shown the door. Just like trying to buy life insurance: nothing, at no price, was on offer. I’ve kept jobs I hated and made major relationship choices with fear of dying from lack of health care in the back of my mind.

Sounds dramatic! But it’s also true. I function pretty healthily as a productive part of a family and economy as long as I have access to specialists and medications. This primary level care keeps my organs functioning with regular blood tests, cheap prescription drugs, expert medical advice, and the will of fate. Without it I would pretty likely begin to lose major organ function and become disabled, a net negative as I relied on social security disability, then after that absurd waiting period (during which let’s say I develop end stage renal disease requiring dialysis), draw heavy on Medicare and Medicaid for tertiary level care. I have a dependent too, so add in my scant but still worth mention social safety net benefits. Let’s be honest, with ESRD and a not-hot candidacy for transplant I’ll probably be dead in 5 to 10 years, leaving social security to pay them death benefits to my child.

Grim! And I’m keeping it purely economic. There are people who would miss me and I don’t want to be disabled and for sure am afraid of dying young.

So back to my Obamacare. I bought coverage this week. I will get to see the people I need for this next insurance cycle! The site only crashed 4 times! $450 a month covers me and the wee one. I’m getting a chance to try my hand at freelancing. I. Am. So. Thrilled. (I’m still in working in the hospital, just not in a position that offers benefits) The threats of repeal feel like real violence against anyone with a pre-existing condition. They also motivated me to take the leap while the net was still intact.

I try to keep it clean most of the time but given his flippant threat to my life I’d like to say fuck you to Tom Price. ✌️

Culpeper cardiologist accused of striking hospital nursing director | News | dailyprogress.com

A Culpeper cardiologist faces a misdemeanor assault and battery charge stemming from a reported confrontation with a female nursing director inside Novant Health UVa Health System Culpeper Medical Center

Source: Culpeper cardiologist accused of striking hospital nursing director | News | dailyprogress.com

Hi Doc! I hope you get fired. And fined. Props to the nurse admin who pressed charges. I’M WITH HER.

I trained at this rural community hospital. It was not an extraordinarily hostile environment. In my limited experience it was probably a 4/10 on the pain scale of abuses nurses suffered at work. Still, I’m not surprised by this repulsive development. Workplace violence, mostly verbal, is a reality of hospital work. At UVa Culpeper there was almost no interaction between MDs and RNs. The general view of nursing was that this was a group of low class, poorly educated, lazy to the point of obstructionist women. A recipe for disaster.

Nursing should be a force to be reckoned with, different but equal to medicine. Respect and autonomy are harder to come by in community hospitals–but this is a battle worth fighting. It should be noted that difference between community hospitals with minimal nurse autonomy and governance and large academic medical centers, particularly Magnet organizations, is massive. Wherever they are, nurses must be empowered as professionals to participate in advancement of their own practice. We have an important job and we have to be nailing it: know the orders, read the notes, understand the clinical picture (plan even!), be engaged enough to know the why of every drug and intervention. Be twice as good as the doc. You know what I’m saying. Do it backwards in high heels.

I see two practices for improving our situation as a historically subordinate profession: 1.) (Dare I say it?) We are stronger together. Active nurse governance at your hospital. Sit on committees. Insist on getting paid for this time, because this is not the PTA and we are not volunteering. THIS IS A PROFESSION. 2.) Get to know each other. Inter-professional education has shown anecdotal promise, even if the studies aren’t strong. Hospital administrators, you can facilitate this at non-teaching hospitals. If you work at a teaching hospital you’ve got the advantage of working with baby docs. Share your experience, and they will often share their shiny new medical knowledge. Either way, just talk to people. Regardless of their credentials they are in fact people. Here are some topics of discussion to get you started: kids, dogs, mortgages, food, car repairs, patients. It’s hard to hate (or hit) someone whose humanity you recognize.

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.

mri-scan

mri-scan2

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.