Site changes and how a freelancer lives!

Note: I did do a conference call. It’s not all Jenga and mac and cheese.

Stories patients tell

I’ve been writing full-time for three months now. Being off the hospital floor has done wonders for my aching back, my parenting, my complexion…and I won’t lie I’m not sorry about missing a horrendous flu season. But I miss patient care. Taking care of strangers was a privilege. And the antidote for the morning news. Bigoted, hateful things lose power after a half dozen conversations with the typical rainbow cast of normal humans at your local public hospital.

I miss it today. Here’s a post I found in languishing in my drafts folder. An attempt to capture what I loved about patient care.

My reasons for being a nurse are selfish. I love stories. Taking care of humans for a living was my passport into every socioeconomic, ethnic, racial, psychological, pharmacological kind of humanity. The wildest thing is that everyone thinks their story is the normal one.

A patient might present with humor. Maybe stoicism. Open tenderness for their spouse. They give me stories that show how brave, how smart, how kind, how resilient they are. Or they may present with impaired coping: venom between parents and children. Complete submission to despair. The desire to mete out as much pain as they have been given.

The way people handle crisis of health: physical pain, just plain bad news, never ceases to amaze. An appetite for what people have to say for themselves is what makes me love being a nurse. And hate it.

Sometimes the stories are whispered. Yelled. Told in profane or racist or sexually suggestive language. Sometimes the story is just a kiss between people who have long since celebrated their 30th anniversary. Divorced spouses who sit him beside her as she’s dying. An elderly woman whose power of attorney is a neighbor that takes three days to locate and another to drop by and sign a DNR. A grandpa whose eighteen grandchildren from six different states come stream in. His hypertension abates when they stand around sharing details of their days. Another patient who becomes hypertensive when her mother is in the room.

People sing hymns. People fight with the priest. A retired four-star general occupies the room next to a man living in government housing. Everyone engulfed by their own narrative, healing or getting sicker, thinking they are the normal one. Feeling like this is the first time anything so scary or tragic or miraculous has ever come to pass.

It’s little me, the nurse, that gets to know all these stories. I still pass like a specter through them, over the borders of these private worlds, from room to room.

CVS-AETNA merger (I told you so, mom)

The things going on in corporate health care these days. Woo! It’s like my own personal Boiler Room. Our care system is at the point in its spring cleaning when all drawers have been dumped on the floor to sort out the junk for donation, the cleaning products are strewn about, and there’s a half-built really expensive organization system that refuses to fit together. Here come the tears because HOW IS IT EVER GOING TO GET BETTER!

I get the pleasure of interviewing corporate executives, medical directors, and patients all doing the work of trying to straighten this place up — it gives me a great deal of faith that it will in fact, get better. It is going to be messy.

Today’s Upshot by Austin Frakt gives a superb sum-up of the why and what for of Sunday’s $69 billion merger. Two pull quotes below. Dust off your macroeconomics text books, it’s vertical integration in the land of the free (who pay an average of $10,000 a year on health needs). Consolidate. Cut middle men. And as always, gather ye customer base while ye may.

The CVS-Aetna deal would be just another of the many recent mergers across business lines in health care. Insurers are buying or partnering with health care providers. Health systems are offering insurance. Hospitals are employing physicians. Even Amazon is jumping into the pharmacy business in some states. This may be part of the motivation for CVS to buy Aetna — defensive jockeying to maintain access to a large customer base that might otherwise begin to fill drug prescriptions online.

One source of optimism: Research shows that coordinating pharmacy and health benefits has value because it removes perverse incentives that arise when drug and nondrug benefits are split across organizations. When pharmacy benefits are managed by a company that’s not on the hook for the cost of other care, like hospitalization, it doesn’t have as strong an incentive for increasing access to drugs that reduce other types of health care use. That could end up costing more over all.

As a postscript, I know the first thing that comes to mind when seeing “billion dollar merger” is monopoly. We hate those. With intact heavy regulation, however, monopoly is not at the top of my nightmare list for the health care industry. What is? Corporation as person, with all the legal rights of, and free from the deterring power of class action legal suits. That keeps me up.

There is a movie review in this blog.

Print journalism has been so good these past months that felt like years. Remember back in 2012, that gleeful feeling you got when you read Pete Wells’ review of the Guy Fieri superfund site in Times Square? Well, I just re-read it and it is a mere amuse bouche for the righteousness served daily by journalists at the Washington Post, New York Times, and smaller dailies in Detroit, Cincinnati, so on. Oh, lord, ProPublica’s piping hot Pulitzer-prize winning online investigative journalism. Just as you might “a plate of pale, unsalted squid rings next to a dish of sweet mayonnaise with a distant rumor of spice,” choke down this justice!

All of this is to say that print journalism is being the kind of excellent that one can only imagine was motivated by a prior laziness, a willful misinterpretation of equal coverage, a cowardice so big it created a universe of language to explain a phenomenon where one word would do (lie); all contributing to the rise of the a leader that in brief, is frickin’ dangerous.

SO! What I mean to say is now is the time to hug your journalist. And, if you like me think human lives are fascinating and the people that spend theirs writing about others even more cause they are themselves fascinating in super intelligent, hard to get along with, quirky beyond all reason ways, please watch the documentary Obit.

Somewhere buried in the documentary the writers address the “isn’t it sad to write about dead people all day” question. I couldn’t agree more with the answer, which is: not at all. They get to write about a life that, likely if it makes The New York Times, is full and brilliant, meaningful, left a legacy, and often lasted a long time.

I feel the same way about taking care of people at end-of-life. Is it sad? Not usually. Not really. No.

I regret even starting with the Guy Fieri stuff. I’ve lost my appetite.

 

 

 

 

 

 

No more free birth control, says President

That’s right. I was pretty stoked about the Affordable Care Act requirement that birth control to be 100% covered by all insurance plans. What a great thing! To not have to pay more for health care simply because you have a uterus! To make accessible the means of controlling when you will have children, thereby increasing your chances of advancing your education and career, making you, a uterus-haver, more able to pursue the dream of being an independent and self-sufficient citizen-contributor.

Allegedly the pres. wants to put a stop to abortions. Presumably the fewer abortions the better?  Since free birth control provided by the ACA became available the number of abortions per capital dropped to its lowest level since data collection began at Roe v. Wade.

MAKE UP YOUR MIND.

This is abysmal health policy. Terrible public policy. Bad economic policy. And its perfectly in tune with the administration’s regard for women. NONE.

American guns and public health and hope.

America is not a hostage to itself in the battle over how to handle guns. We are able to change. The evening after another massacre, the word weary for being trotted out month over month, I’ll make an appeal.

With the will, we can get better.

Our current president dismissed the Surgeon General Vivek Murthy, the first in the position to declare gun violence a public health issue. Like HIV/AIDS in the 1980s and tobacco in the 1960s, the Surgeon General can be the first political officer to acknowledge a public health disaster. This should not be a controversial position…I’ll quote from Healthcare Triage, which has a very worthwhile primer on gun death stats:

guns hctraige

There is evidence to show that a gun-loving nation can be made less violent. You may know the history of our fellow former colony (and the only place where you can make a grittier western than home) Australia, and it’s remarkable policy-driven turn around addressing gun violence. Through compulsory buy-backs, stricter regulations, and cutting off the flow of new guns among other measures, the country responded to a harrowing mass shooting with sweeping policy change that turned their gun violence trajectory upside down. Sure, they are more than ten times smaller than the US. But in most all measures they are our closest comparator. There is no reason that their success could not be seeded here.

No reason not counting money and gun makers and, most important, political will. All of this is just to say we’re selling ourselves short with thoughts and prayers and other things offered in the face of hopelessness. We can get better.

 

 

 

 

For the love of kids! Reauthorize CHIP.

The Children’s Health Insurance Plan (CHIP) covers the gap of pregnant women (in my state of Virginia) and children whose families earn above the federal poverty level (FPL) but are still low income and resource stretched. For those between 100% and 250% of FPL, CHIP means prenatal care, regular check ups, vaccines, and access to affordable health care and medicine.

This program is essential. It covers pregnant women and children. Losing CHIP will be costly in terms of quality of health, length of life, and hard dollars. Make good choices, congressmen.

On the eve of it’s expiration check out this CHIP facts and figures thread from @emma_sandoe (policy-wonk, PhD student, and Medicaid warrior):

 

 

Friendly neighborhood sick person weighs in on health care debate.

When I used to freak out about losing my health insurance/access to care, not being able to afford medicine, I always pictured my parents losing their house to pay my medical bills. It was the greatest loss imaginable. In the past months my catastrophizing has changed. Now, my mother won’t sell her home, cash out her retirement. I fantasize about dying from lack of care. If my cancer comes back, if I can’t keep my job, if I lose my insurance and I can’t afford to get treatment–I won’t seek care. I’ll die of my illness.

If anyone every told you I’m stubborn they weren’t lying. I indulge this fantasy of martyrdom to my hard-hearted country.

I need to express the psychic weight that the debate over who deserves what coverage burdens me with. Watching the monetary value of my continued American existence up for debate just a few miles from where I live. I cost healthy people too much. My debility or poverty disqualifies me, abdicates rights I thought were mine… life, liberty, something else… but yea, life. Not that.

In my hospital we have special education high school students working as volunteer helpers. Not everyone welcomes them. They are different people and require a slight adjustment in communication. They require accommodation.

They came to the hospital to work with assistance of a career coach and the support of our unit manager. They are kind and interesting, alike to most young people. Tremendously helpful, alike to most young people. Restocking supplies, lending a hand to grab a wheelchair or a drink for a patient, going to the waiting room to track down someone’s elderly family member who won’t answer a cell phone. They complete tasks that keep everyone in the unit moving forward. Days that I’m swamped, they keep me afloat.

The myth of the productive citizen baffles me. I’ve met a lot of people. Strangers coming out of anesthesia tell me dark secrets. No one conforms, not all the time. We are a big interdependent mess. To define productive and make it the measure of value is a terrible effing idea. This ideal of a completely independent working class American is at the core of the repulsive rhetoric I see daily.

What we are capable of is influenced by what we are told we are capable of. The political dialogue, a demoralizing debate over who is worthy of access to care, corrodes the potential of the precise people that have renewed American greatness again and again. The striving poor, immigrant, person of color, victim of circumstance. The young. Mounting arguments to deny the very poorest, the sickest, the youngest among us the scant safety net of Medicaid and strip us of legal protection to not be discriminated against due to sex and preexisting conditions, is undeniably passing judgement on who deserves healthcare. These groups of people, my people, have no chance to acquire health insurance without the protections set in place by Medicaid and the Affordable Care Act. To be without insurance is to be without access to care. The message is this: you are uncared for. To be perfectly clear, you are left for dead.

The health care debate is deeply personal. The abandonment of my cause, my cause being the pursuit of a productive and healthy life, by so many of my fellow Americans. My president, my representatives.

Since my diagnosis at age seventeen I kept my lupus a secret from most. A learned behavior from my father who shared the same diagnosis. He came of age in this country, a sick person in a time before the Americans with Disabilities Act. The fear of being found out, losing out on educational opportunities, jobs, insurance.

I lied on my college applications. I lied on my job applications. I’m not sure if you’ve noticed, but there is a box to check for “I may require reasonable accommodations” i.e.–I have a disability. NOPE. Nope. Per dad’s advice, cross that bridge if you come to it. You don’t need accommodation. You can pass. I can pass for healthy. I’ve never had trouble getting a job.

But I was ashamed. Sneaking around in the shadows will do that to a body. Fearful of being judged as burdensome. A waste of the world’s resources.

To experience the birth of the Affordable Care Act and its protections after a labor so long and fraught was elation. Immense validation. I was hearing from the highest office in the land that my worth, my potential, was not degraded by chronic illness. It’s no coincidence that it was in those heady days I returned to school and became a nurse. I chose a challenging career in a field of service. I was pushed, encouraged to dedicate myself to progress personal and political. In no small part because of the leaders of my country put all the chips on the table to codify the belief that health care is a human right.

Since the ACA passed, I’ve checked the “accommodations” box. When I go to an appointment, I don’t lie. My coworkers no longer think I am hitting the dentist’s office monthly. I can pass, but I need everyone to know what a disability looks like. Which is, in my opinion, human. The messages that came from President Obama, from my representation, from advocacy groups all over the land made me feel like it was okay to exist as I am.

Permission to exist is a powerful thing. It isn’t hyperbole to say that the Affordable Care Act is my own civil rights legislation.

It despairs me to hang on as the pendulum swings against it. But hold on, it matters. Keep saying it, no matter how ridiculous it feels to say, children and women and the sick and the elderly all deserve equal protection under the law. Our nation, and me, well… our lives depend on it.

PS- Somebody make me a bumper sticker that says “KEEP YOUR HANDS OFF MY OBAMACARE”