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.

(GOOD NEWS AFTER THE ARTICLE) This study shows so much of what’s wrong with medical research today | The Incidental Economist

This study shows so much of what’s wrong with medical research today | The Incidental Economist.

I won’t wade too deeply into this pool right now. Every moment I spend is borrowed time from NCLEX studying. But it’s worth mentioning that despite the incredibly difficult environment of academic research I see all around me nurse researchers doing what nurses are known to do–finding a way to make it work. They are making efforts to conduct unit-based research and if appropriate expand evidence based practice to other units and through professional networks to outside health systems. This research focuses on patient safety, quality improvement, and money savings to patient and health care system. Simple, cheap, and effective are markers of success. The example of using the blood pressure cuff to reduce kidney damage in cardiac surgery is right up the alley of unit-based nursing research.

Recognizing bedside nurses as professionals with the capacity to contribute in this essential way to the improvement of care (and bottom line) is mandatory for health systems moving forward. We are endlessly capable when given the time, the tools, and the support to make positive changes. It’s a super bonus that we aren’t stuck with the difficulties ($$$, popularity contests) of grant-dependent research.

At the health system I trained in a nurse is championing Enhanced Recovery After Surgery (ERAS) protocols. Unit by unit she is getting buy in and rolling it out. I’ve seen her data: it is significant. Patients are going home sooner and healthier.

So my plea to my fellow nurses is publish your work! Read each other’s studies! Let’s flex our skills. Let’s brag on each other. There’s a lot to be proud of.

“This is a lesson in you never know which day will be your last” –ICU preceptor

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At the community hospital we don’t generally see extremely sick patients. We see a lot of patients who are finishing a long battle with chronic lifestyle-related illness. At the end of their rope. Not many in our ICU are in the grip of acute critical illness. Yesterday I saw my first patient in that category. And as we were running three vasopressors, fluids wide open, assisting in placing central lines and arterial lines and monitoring central venous pressure and ever-tinkering with settings on the vent in a desperate attempt to keep our walked-into-the-ED-with-a mild-URI-a-day-ago patient alive, I had a little thought. This is when I want critical care in my life. This is what we do best.

We are no good for the end-stage congestive heart failure patient. We often prolong suffering in the quest for unattainable health, or in the absence of goal setting or planning. See Being Mortal.

But this patient needed all of the antibiotics, all of the drips, all of the chest x-rays, labs, cultures, all of the lines and vent and monitoring, all of the time of the best nurse on the floor. All in a desperate attempt to keep her alive long enough to recover. Which, I can’t stop worrying, was in vain. But even if, this was the patient that could have been given life back by the invasive, painful, and expensive interventions we have on offer in the ICU.

I don’t have an advanced directive at the hospital (don’t tell my nursing profs). I promise that If I had a chronic severely debilitating and worsening illness I would file a DNR/do not resuscitate (but preferably an AND/allow natural death). For now I don’t trust our system to distinguish the scenarios in which I want or don’t want a ventilator. I wrote out a directive and gave it to a loved one along with specific details about what quality of life means to me. If need be they can bring it to the bedside.

You don’t know when trauma or acute illness might give your shoulder a tap. If I’ve got a chance give it to me. And I want your best nurse.

PS- I know I’m on ethically shaky ground. This is my opinion on this day at this time, emotional and not all that well-informed. It’s Wednesday and I am wrung out already.

From the E.R. to the Courtroom: How Nonprofit Hospitals Are Seizing Patients’ Wages – ProPublica

Under federal law, nonprofit hospitals must offer care at a reduced cost to lower income patients, a service often called charity care. But crucial details—how poor patients need to be, how much bills are reduced, and how policies are publicized—are left to the hospital. The Affordable Care Act empowered the IRS to set new requirements for publicizing this information, but those have yet to be finalized.

If a patient can’t pay and Northwest obtains a judgment, it’s too late. Hospital policy says once the collection agency has “incurred legal fees” on a case, the patient is ineligible for charity care, regardless of earnings.

via From the E.R. to the Courtroom: How Nonprofit Hospitals Are Seizing Patients’ Wages – ProPublica.

I’m breaking my break because this spectacular piece of investigative journalism is really all I wanted for Christmas. This is an issue that makes the individual mandate, as Salt-N-Pepa might say, very necessary.

Charity care/financial assistance is available at my academic health system. Patients qualify for financial assistance based on income and payments are calculated with a sliding scale. They may owe nothing, a percentage of the total, or be put on a payment plan. This article uncovers that the criteria for how a patient finds out about or applies for or qualifies for financial assistance is largely left up to the hospital. As a recent cancer patient with massive bills but good insurance and 2/3 of a graduate degree from the academic health system where I received treatment, I still messed up paying the hospital. Medical billing is incomprehensible and damn tricky. Adding the difficulty of applying for financial assistance on top of your stack of bills from many non-communicating entities is the real cherry on top of the garbage sundae. No, it’s an additional garbage sundae on top of the garbage sundae. No, it’s just a pile of garbage.

Bottom line: Access to aid is limited. Barriers to aid are significant. And, most shockingly to me, once you have been sued successfully by the hospital, you no longer qualify for aid. *MIND EXPLODES*

A complete novice refutes the statements of a qualified professional

Why I oppose payment reform- Alan Weil, Health Affairs Blog

Interesting article but I’ve got counterpoints ’cause I’m a student with more opinions than I have a right to and am cocksure enough to comment on statements made by the editor-in-chief of Health Affairs.

Summaries of his points are in bold. Please read his article regarding opposing payment reform in health care to get his full and well considered arguments.

The current workforce is unprepared for a model that doesn’t reward for filling beds, doing tests:

  • There are tremendous rewards for innovation in the field of health care right now! These folks have seen the model they came up in become more and more of a frustration to them and their patients. Everywhere I look, from floor staff to executives, the feeling is very get on the train folks, we’re heading to the future. Alternately: retire, find a different gig, or learn to cope with the new requirements. People are learning to become successful and you better believe that new leaders are prepared for these challenges.

Any money saved will move its way to the top (health systems, hospitals) and workers on the front lines won’t see any benefit:

  • Maybe. Based on the ones I’ve spoken to I don’t think dietitians, social workers, and community health workers are expecting a huge raise. But many hospitals are dramatically understaffed in these positions to the point that they are unable to perform the core competencies of their roles. As these workers bring forward evidence showing the financial benefit to hospitals of having, say, a full time dietitian to improve nutrition and reduce pressure ulcer rates, hospitals will have a financial reason to staff these professionals.

There is no current evidence to suggest that payment reform will achieve the goals we need it to achieve, and there is some evidence to the contrary.

  • Okay, your evidence is good here, but early days! There is evidence showing smaller programs put into place are already saving money such as reduced re-admissions with heart failure transitional care (article unfortunately not open access, DOI: 10.1097/JCN.0b013e31827db560).

The original rationale offered for payment reform doesn’t match the current objectives.

  • I think it does match that original rationale (to pay for quality rather than quantity of care). Health systems do not have an incentive to stop a practice for which they are getting reimbursed. We know patient falls are bad thing for a patient, but more days in the hospital to recover from your now necessary hip surgery is money in the hospital’s pocket. Why would you spend money reducing falls to stop yourself from making money? When hospitals are told they won’t be getting paid for the consequences of that fall innovations in care happen and adverse event rates go down. Of course we need metrics to quantify success and failure, and because these rule changes are rolled out in a way that intends to give health systems time to introduce new measures without sinking the rusty old tub. And certainly hospitals with higher acuity patients are getting the shaft, hence even more complex models to try to even the playing field.
Payment reform poses a risk for the growing understanding of the importance of patient-centered care (What is an appropriate value formula when patients differ in their goals for recovery).
  • The value formula is simple: “Patient, are you satisfied that you have reached your stated goal of x?” If your 95 year old patient states his goal is successfully completing the Marine Corps Marathon pain-free then you’ve got to use your negotiating skills to get him back on this planet. The point is to set patient centered appropriate goals before undertaking invasive or potentially harmful interventions.

Now everyone feels bad about the pies.

(Image from CDC)

Happy day after Thanksgiving. Now that we’re all in regret mode, diabetes! This is a slow-motion public health train wreck, amiright? And it’s another marker of race disparity in health… but I’ll save that for another day.

Diagnostic for diabetesHemoglobin A1C>=6.5 OR 8 hour fasting plasma glucose of >= 126 mg/dl OR oral glucose tolerance test of >= 200 mg/dl OR random plasma glucose of >=200 mg/dl.

Super user-friendly.

So diabetes is a clear medical diagnosis to make, but telling someone with a fasting blood sugar of 120 that they do not have diabetes is the wrong message. You either have HIV or you don’t. Diabetes is a disease on a continuum. Even with moderately high sugars the vessels of the fingers and toes and heart are getting damaged. The delicate vasculature of kidneys and eyes is getting all junked up, and pancreas… oh poor pancreas you will never be the same.

So it would make sense to do some intensive nutrition education for people that fall into that pre-diabetic category, you know, maybe keep them from become full-blown diabetic? As it stands, Medicare does not reimburse (pay for) nutrition consults until you have the official diagnosis of diabetes. So we are giving nutrition education to people in the hospital after they have had their toes amputated, between debridements of wounds that won’t heal, and in dialysis while they wait for a kidney transplant. These are miserable, life-limiting procedures. All of which are way pricier than some front-end nutrition education. And the cost of diabetes has increased 41% over the past 5 years.

My mom falls into the pre-diabetes category. I write little lists and send texts and talk to her on the phone about how she is managing a blood sugar that is next door neighbors with diabetes. Based on my very limited knowledge of nutrition (nursing schools could really fortify this part of our education), here are some of tips I’ve given her: First, 5 a day, lots of fiber, and minimal processed foods. Look for added sugar in all all foods, especially processed. If a product is labeled low or non fat, you can assume that they replaced that fat with sugar. Check the label. Also, exercise helps your cells metabolize sugar, bringing down your blood sugar. Even if you don’t lose pounds. What else can I do? I’m genuinely asking.