The president got published in JAMA! This is a lovely, academic, chock-full-of line graphs sum up of the past 6 years of changes. Uninsured rates are way down, access and quality measures improving. The economy has responded positively. The health care world is topsy-turvy, and it is undeniably rough in the ranks of hospital management. But in spite of the challenges to the health care industry, the protections that the Affordable Care Act legislation provided make me as a believer in health care as a human right happy. And very frustrated with my home state and others that have declined to expand Medicaid.
It’s strange and sad that I celebrated the upholding of the ACA in the office of a Free Clinic where I volunteered, thinking it might be the end of clinics covering adults below the federal poverty level with a patchwork of volunteer services, state funds, and grants. I’m sorry that virtually nothing has changed for the patients we saw at that clinic. Hospitals in non-expansion states are still going uncompensated for millions of dollars of care. The federal government DSH (disproportionate share hospital) dollars that used to support public hospitals with large numbers of uninsured have declined as that money was plowed into ACA program support. One last insult: if you are paying federal taxes in a non-expansion state, your money is fed into Medicaid for adults in other states, while your health infrastructure is starving. But that is not the main focus of the article. This is a celebration. A statistically-backed victory lap. But don’t take my word, listen to Barack Obama, JD:
The United States’ high uninsured rate had negative consequences for uninsured Americans, who experienced greater financial insecurity, barriers to care, and odds of poor health and preventable death; for the health care system, which was burdened with billions of dollars in uncompensated care; and for the US economy, which suffered, for example, because workers were concerned about joining the ranks of the uninsured if they sought additional education or started a business.
Source: United States Health Care Reform: Progress to Date and Next Steps | JAMA | JAMA Network
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.
Daytime television isn’t historically the best place to educate thyself, but isn’t this “The View” moment a great opportunity to explain to our patients what we do as nurses?
So far as I can tell, a lot of everything pretty much everywhere. “Nurse” covers a heap of credentials, too. It may be the CNA or Certified Nursing Assistant who takes your vitals (may use stethoscope!) and assists you in getting fed and staying clean and comfortable in the hospital. It could be the RN or Registered Nurse who dresses your wounds, asks about your pain, listens to your lungs, and behind the scenes communicates how you’re doing to the doctor– including a recommendation for action–and, god love him or her, gets you that pain med you desperately need. And you know what? It may be that the RN who asks about your pain is communicating with an APRN or Advanced Practice Registered Nurse instead of a doctor to get you the proper medicine (Nurse Practitioners, Certified Registered Nurse Anesthetists, and Certified Nurse Midwives fall under the APRN heading and may prescribe medication).
The funny thing about a nurse is that no matter what their title/education/credentials, if it’s within scope of practice, they will take care of patient needs. I’ve seen APRNs change soiled beds. I get care from an NP who has spent hours corralling my records from various specialists in various health systems. (She waited on hold with patient records for me. I love her.) Does the patient need it to receive quality care? Is anyone else taking care of it? Nurses are get it done people.The pros and cons of weakly defined roles and challenges of delegation are a topic for another day. One with less post-surgical morphine, perhaps.
I actually got a cardiologist’s stethoscope for graduation. I’m fancy. When I planned on working in a Neuro Intensive Care Unit I knew it would be useful for my newbie ears when it came to hearing bruits in patients’ carotid arteries. When I start work as a community nurse visiting homes of pregnant women, one thing I’ll use it for is getting an accurate blood pressure to check for signs of preeclampsia. Early detection of high blood pressure in a pregnant woman can save her life and the life of her baby, so I best show up with my tools. She depends on me. Her doctor or midwife does too.
I use a stethoscope since it’s a valuable part of the medical trade. Just like me. Simple as that, really.
No matter how much time I do in the MRI I always go in a nervous wreck. My favorite writer and spirit guide David Rakoff (whose death nearly three years ago from a sarcoma secondary to radiation treatment for lymphoma in his 20’s has left the saddest and most fearful absence) gave some fantastic advice about surviving time in “the tube” in an interview well before I had regular dates with the scanner. I’ve taken it to heart. Keep your eyes closed, breathe, and recite your favorite poem to yourself.
As a new nurse let me remember that sending a patient for scans will become routine for me, but it will never be for them. Let me validate fears and take time for words of comfort and advice (eyes closed, someone is always watching out for you, it gets warm in there, it is very loud, think about what music you’d like to listen to, know you are safe).
David Rakoff recites his favorite poem “Letter to NY” by Elizabeth Bishop:
I recite mine “Birches” by Robert Frost (one exhausted take, please forgive):
Neil Gaiman recites “Jabberwocky” by Lewis Carroll:
In my opinion, a memorized poem is one of the best things a person can have. Useful in any number of situations.
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.
Graduate school has decided to be acutely painful in its final days. I’m couch-surfing through my last week. After that my friends I will resume responsibilities as mother, occasional blog writer, and amateur critic of everything that crosses my path.
Had to share this as I went down a rabbit hole on a health policy paper and ended up at this speech–recommended by my #1 policy prof via a note on an old assignment, “one of the most powerful political speeches of the modern era,” and what do you know all of a sudden I have time to look it up. RFK quotes Aeschylus. And the people of the Starbucks are used to my crying by now. You’ve seen it before? Are you watching the news? Watch this again.
Robert F. Kennedy delivered this impromptu speech announcing the death of Martin Luther King, Jr. to a largely African American audience in Indianapolis. His brother was dead 4 years, and he would be assassinated before the spring was out.
Have we become so cynical that our leaders are unable to move us? Or is it the patina of time that makes this sound genuine? Listen anyway.
Global public health development goals: Paul Farmer on who lives and who dies..
Economics should never have sought to divorce itself from the other social sciences and can advance only in conjunction with them. -Thomas Picketty
A day late for World Health Day. I hope my prof won’t mind if I share an article from this week’s readings. It’s going to be a task to disentangle the social injustice from the ethics of access from the rageifying post-colonialist cut-and-run, then weave in a thread of third world problems here in the US, but hey I’ll do my best to analyze coherently.
I can’t tell if the article is unwieldy or if it’s just my feelings on the subject. Either way a worthwhile read.
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.
Sorry y’all for all the personal posts of late. I’ve had some trouble crossing the Lethe that runs between the hospital and my house (rt. 29). Forgive me, that’s the last time “death” becomes a tag in three consecutive posts.
From my policy textbook this AM, I thought I’d share:
The evidence that insurance and the access to care it facilitates improves health, particularly for vulnerable populations (due to age or chronic illness, or both) is as close to an incontrovertible truth as one can find in social science.” -Austin Frakt
So I’m working up the guts to post a statement of benefits that will help show the calculus that goes into medical billing. As I’m finding the courage, take these two super-fun health policy quizzes! It’s like Jeopardy but the only category is health policy! IS THIS HEAVEN?!
International health policy quiz
Final Jeopardy: The Medicare program was signed into law by this president. (Hint: to answer this question you must know the difference between Medicare and Medicaid, study up!).
You are so welcome.