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Where’s the beef?

September 23, 2009 by orphanus

Kaiser apologists of every flavor can not figure out how I can willfully display the unmitigated gall to decry their shoddy care. “Look how they’ve brought costs down!” they say. “Their quality scores are competitive!” they crow. “They’re not for profit!” (as if) they cheer.

There are a few (I can count them on one hand) things I think Kaiser does well. I love, love, love their phlebotomists. Billing is certainly easy (although I’d go back to 20 hours a week of fighting insurers to actually get help when I contribute to “cost sharing”). Having everything in one building is a convenience, and can expedite labs and imaging.

None of this can overcome their most glaring failure: the time available for office visits.

A section of this most excellent post, quoting what appears to be a most excellent article, explains why.

Of course for the vast majority of humans out there, a few minutes of face time with a doctor isn’t going to make a bit of difference. They come to the doctor for physicals, immunizations, births, tests, sprains and colds. For those commonplace medical needs, Kaiser is quite acceptable (mostly). In fact my favorite internist shared with me a quip whispered by his colleagues: Kaiser is great… if you’re healthy.

But what if you’re not? Eventually you are a product of attrition, by one method or another.

So what does that leave us? Health coverage for the healthy (Kaiser) and health coverage for the sick (Blue Cross? Medicare? Wealthy Uncle?)?

What happens to affordability, if the healthy are all covered under one cheap system, and the sick under another?

What happens when the premiums for that cheap system become more expensive, and in spite of the…. narrow coverage, can’t compete with more comprehensive coverage?

What happens to the patients caught in the middle? What happens to medical ethics? What happens to the knowledge gained through hundreds of years of medical enlightenment? When medicine is by assembly line, and any one physician sees only a narrow view of any given patient, what happens to our generalists? Our diagnosticians? Who can identify and mange the complex, multi-system diseases and disorders?

My problems with Kaiser go far beyond my personal care. Their model of practice is like a cancer that has spread far beyond it’s original confines. While some may disagree, Wal-Mart certainly has it’s place, things it excels at. But Wal-Mart will never be Macy’s.

Just because some things can be done quickly,  cheaply, efficiently, does that therefore mean we want all measures of efficacy reduced to the lowest common denominator?

Posted in Kaiser Permanente, health care | Leave a Comment »

I said there’s no swelling….

September 22, 2009 by orphanus

IMG_1115

They say a picture is worth a thousand words. This one, shocking though it is, doesn’t begin to tell half the story.
As I mentioned in this post, my 10 inch incision sprang a leak. Unfortunately that wasn’t the end of the fluid accumulation. Not long after having my drains removed, my abdomen began to swell. Alarmingly. Painfully.
I called my surgeon’s nurse several times, but since there were no signs of infection, they couldn’t fit me in before my next scheduled post-op appointment. I tried to grin and bear it, but as you can imagine, that kind of weight bouncing up and down in newly incised flesh was… less than comfortable. In fact, it could more accurately be described as excruciating.
Finally in desperation, I decided to brave the long waits and hostile environs of the Kaiser ER.
I’m settled into a room, and wait, wait, wait a few hours for a doctor. 3 hours later, a bleary eyed resident makes his way down to the ER. He asks a few questions, orders a few blood tests, and leaves.
A few hours later he returns to tell me the blood tests showed nothing remarkable, and that he didn’t see any evidence of swelling.
I said, “but I…”
He replied “I said there’s no swelling”.
I said, “but, my….”
He said: “I SAID, there’s no swelling”.
I said, “but, but….”
His eyes roll back, he grabs my abdomen by the “not swollen” part, shakes it violently, and bellows in my face:
“I SAID, THERE’S NO SWELLING!”.
The nurse on my other side jumps back and looks around as if affirming her escape route, but remains silent. The doctor slams around for a few minutes, writes some notes, mutters something about he supposes I want pain meds.
Knowing where that question is likely to lead, I say no, in spite of the fact that I’m now in worse pain than when I arrived. He looks surprised, looks at me, and says “no?”. I squeak out a repeat no, just desperate to get him the hell out of the room, get my discharge papers, and be out of this place. Home might not bring healing, but it doesn’t bring additional injury either.
A while later the nurse comes in again with my discharge papers and the boilerplate suggestion to follow up with my surgeon. The next business day, I call his nurse. I get an incredibly snarky response, and no chance of a sooner appointment. I mention I was told by the ER to follow up, and the nurse replies “yes, I see the ER notes here. They didn’t find anything. We have lots of new cancer patients, so we don’t have any appointments available. We’ll see you at your post-op.”.
Still weeks away from that date, I muddle through as best I can, my abdomen becoming larger and larger. Beginning to fear I’m losing my mind, I ask my husband to take a picture. It sure looks swollen to me, but maybe it’s just the angle, or maybe I don’t know what I’m talking about.
The picture sure looks swollen. Desperate for any kind of second opinion, I attach it to an email to friends from a parenting group. One of whom happens to be a nurse at a wound care clinic. She immediately fires back: honey, that’s a seroma. It’s the largest one I’ve ever seen. Get to the surgeon.
At this point I don’t have much hope of getting an appointment. We finally decide to send the pictures to my surgeon, his nurse, and my oncologist.
Hours later I get a call, asking if I can come in, they’ve made an appointment for me.
I wait in the procedure room, and the doctors enter. The oncologist is so livid he’s purple, peppering me with rapid-fire questions: “Who was the doctor? What did he say? There’s no swelling? What was his explanation for, for… this? Nothing?”
It takes two surgeons an hour and a half, a syringe and needle that look better suited to a horse and one large basin to drain this monster, one leaning on me and forcing the fluid into the appropriate place where it can be evacuated with the syringe. An hour and a half to drain this non-existent swelling, this figment of my imagination.
No swelling indeed.

Posted in Kaiser Permanente, The Blame Game, health care, the patient experience | 3 Comments »

Profit: 1 Orphans: 0

September 21, 2009 by orphanus

I  went googling for information on how Sen. Baucus’s proposed health care reforms might possibly allow us access to health coverage.

I found this post from a New York Times blog.

Having just been through a layoff, our personal situation is to complex to use as an estimate, so we’ll go with a 4 person family, and a round figure of $100,000, as an example.

So by my estimation, if the above family fell into any category that required more than an annual physical (chronic health conditions, familial risk factors, one or more young children, reproductive age, middle age, seniors not on Medicare) they’re in for a bare minimum of $15,000 per year in health care costs.

So doing some quick figuring of yearly expenditures in my head:

Housing: $33,000

Debt: $7,000

Taxes: $20,000

Health Care: $15,000

We’re up to $75,000, and not one penny spent on savings, college funds, retirement, food, clothing, educational expenses, child care or luxuries.

Let’s try this again using one of our underrepresented orphans as an example.

Payments on prior medical debt of $40,000: $12,000

Housing: $25,000

Cost of managing ADLs insurance coverage doesn’t help with: $6,000

Cost of sporadic services for special needs child: $30,000+

Cost of Health Care (including out of network care since in network doctors rarely treat orphans/unicorns): $40,000+

Oh, you’re bust! Thanks for playing, better luck next time. I’ve heard health care is free when you’re dead. Pretty rough for that special needs child of yours, but he’ll get used to your being gone. Maybe.

I’m terribly curious who Sen. Baucus sat down with when he created this steaming pile of excrement. I envision the insurance industry on one side, rubbing their hands like Potter in the back room with Uncle Billy’s money stashed under his blankie, all the while grumbling about how put upon they are by the Evil Mr. Baucus. On the other side is the GOP, playing nice and nodding along, until the The Moment when the triumphant Senator unveils his plan to a chorus of crickets. Across the table is Beelzebub himself mentoring the Senator in the finer points of sleeping with the enemy.

The only thing funnier than the above image is Sen. Baucus’s proposed solution to the diseased state of health care in America.

I wish I could muster a chuckle thinking about the implications of this boondoggle. Instead I’m choking back tears.

Posted in Politics, health care, the patient experience | Leave a Comment »

The devil you know

September 17, 2009 by orphanus

One of the latest trends I’m finding in trying to get Kaiser to do something, anything to deal with AD, is this tendency to scoff at the information that the current research is showing. Golden little nuggets like “oh, that’s just a bunch of research mumbo jumbo” or, “researchers like to think they know about medicine, but they don’t see patients” or “research doesn’t apply to clinical care”.

Excuuuuuuse me? This is Kaiser, right? Kaiser Permanente? The if we don’t have 20 years of studies conducted by every research institution in the free world then it isn’t true Kaiser Permanente?

Since when did Kaiser (at least here in the Pacific Northwest) become so hostile to research and researchers?

Even the concept of evidenced based medicine worries me. Of course it should be paramount. I certainly don’t want my doctors taking blind stabs in the dark just for the sake of looking busy.

The problem is, we don’t know it all. We have not reached the end of the internet (er, medical research). Not even close. We haven’t even mastered the diseases we’ve been grappling with and funding for decades, let alone those lower on the totem pole.

So what then? What if you have an illness medical science hasn’t been able to research yet? Under evidence based medicine, do we give up? Throw up our hands?

For the most part, that’s been my experience. Symptoms we can’t explain? Oh well. Health problems we can’t name? Too bad. Once I had a diagnosis, it got easier, at least where the major research is conducted. I’m not sure what the difference is between these places and Kaiser, except that in the process of gathering all the evidence for this evidence based medicine, you have to use logic and reason to even get to the point of having something worth researching. Perhaps trial and error, figuring things out, and using similar/related diseases is just second nature.

Why the Kaiser doctors I’ve seen lately see fit to throw up their hands while scoffing at researchers is beyond me.

Of course this tends to be a glaring blind spot in the modern practice of medicine. I’m never sure which shocks me more, the young doctors incorporating old school signs and symptoms into their work, or the doctors who wouldn’t know them if they bit them on the rear, and rely exclusively on lab work to tell them what is or isn’t wrong, and what to do about it. Medicine by the book. Except the book is an infant’s alphabet board book in the face of a universe of complexity that is the human body.

Our knowledge of the human body is still in it’s early stages, and the target of knowing everything we need to know moves further out of reach with each step forward. The more we know, the less we understand. It won’t always be this way, I know, but in the meantime, a lot of people suffer or die on the altar of a slavish devotion to evidence based medicine.

Of course EBM should be the first line of defense. But it can’t be the only weapon in our arsenal.

Posted in Kaiser Permanente, health care, research, the patient experience | 2 Comments »

Will Divorce for Health Insurance

September 16, 2009 by orphanus

My husband was a Kaiser employee, until their recent IT layoff. He still works there, but now he’s a contractor (read: no bennies).

For the last 8 years we’ve been with Kaiser, my health care has mostly been an endless game of no-care hide and go seek.

Except for a brief, shining period of about 18 months where we had their (insanely expensive) PPO, and had the luxury of going to UCLA and OHSU for my health care. During that time, we figured out my health care issues, spent some time in rehabilitative services for physical and cognitive fallout from the adiposis dolorosa, uncovered some underlying complications which carried their own risk, and figured out work-arounds for the issues that were preventing me from improving my own health. Some of my scarier test results improved (blood pressure, CRP, cholesterol), my function and productivity skyrocketed, and my use of pain meds was almost non-existent (yay!!).

Prior to this Kaiser had spent 5 years denying I even had any underlying health problems.

After 18 months of seamless, integrated team based care, and feeling better and  being more productive than anytime in my adult life, we were deeply in debt, and could no longer afford the PPO. So we went back to Kaiser nearly 2 years ago.

Since then I’ve had several doctors. Or rather, I’ve been to several doctors. The only one that would accept the AD diagnosis (one I have from UCSD, UCLA, OHSU, and the two primary care docs I’ve seen since my diagnosis) tried every convoluted means to keep me from darkening his doorstep after our first transfer of care appointment. Blood pressure creeping up? Let me adjust your meds via email (with no questions or follow up). Trouble sleeping? Let’s try a stream of psychotropics (instead of a sleep clinic referral, in spite of a history of diagnosed sleep disorder). Pain? I know that rehabilitative services helped with that before, but isn’t oxycodone so much more convenient (prescribed via email? Is that even LEGAL?). I know you’ve had tremendous success with Rheumatology before, but how about we try an appointment with a dietician first (??????)?

After a year of this, some new complications lit a fire under my rear, and I decided no matter how much I may wish to forget Kaiser’s existence, I’m still stuck with them. I tried to find a new doctor.

Since then, I’ve seen 5 of them. The responses have been interesting, ranging from “nobody in our department (internal medicine) has a passion or interest in learning about new diseases” (really???), to “I graduated from med school 20 years ago, I don’t know enough about cellular biology to help you” (what does cellular biology have to do with anything?). The last 3 had a surprisingly common response. Each asked why I thought I had AD (I dunno, maybe because many doctors from reputable institutions of medical learning think I do?), what my symptoms were, and if I had ever considered that perhaps I have fibromyalgia, since the (thousands) of lipomas could be a coincidence. Lots of people have them (really?).

Fortunately OHSU used the best tools in their arsenal to rule out fibromyalgia, via the trigger point… thing (damn cognitive issues). Not really a slam dunk. Besides which, occam’s razor? When the patient’s symptoms are a nearly perfect fit for one disorder, and not really much of a fit for another, which makes more sense?

We did manage to get a rheumatology referral from each of these doctors, since rheumatology was where we’d had the most luck figuring out how to remediate some of the more worrisome facets of this disease. The total count now is 4 times rheumatology has bounced back the referral, saying it’s not rheumatological in nature. Interestingly, UCLA and OHSU disagree, but whatever. Let’s not quibble.

They helpfully suggested everything from dermatology to endocrinology, and while they might ultimately play some role in my care, it would be in more of a supporting role. What I’m primarily concerned with is reducing the risk factors that go along with AD, particularly the inflammatory component.

We had some hope that with the layoff, my husband would be able to find a job that got us back to having more choice in our healthcare, but so far, no luck. Not only does the economy stink, but he’s so busy working damn near ’round the clock on the new skeleton crew, he doesn’t have much time to look for a job.

I decided to go research our options for getting insurance on our own, but I can’t wait through a 6 month exclusionary period, DMEs are a part of our life, and I don’t have a spare $30,000 a year to spend on health care.

It’s unlikely that health care reform will bring choice to the likes of me in the neighborhood of $15,000 a year (what I can realistically afford without again teetering on the brink of poverty and homelessness) so that leaves me, on occasion, fantasizing about other means of obtaining some semblance of health care insurance.

Hook a canuck sounds mighty tempting. Welfare? Illegal immigration?

There is something seriously wrong when I even have to joke about such options.

My husband is a solid workhorse in the IT world, can troubleshoot like nobody else I know, and he’s got impeccable references. He did get a recent offer, they raised the salary quite a chunk over their top to get him, but ironically, the health insurance was a deal breaker. But it gives us hope. They were a small company in a small town, and just didn’t have much wiggle room. Unfortunately nor do we. But it proves that there is hope.

I’m trying to hang on to that hope. My most recent go-round with Kaiser was a horrible overreaction to an allergic rash. They did an x-ray, and found one side of my diaphragm abnormally higher than the other. There is an x-ray from 6 months prior showing it to be stable, but when you have had as many medical surprises as I have, it weighs on your mind.

It’s hard not to miss the days when we had the PPO, and we had the luxury of figuring out the problems, and figuring out how to help me mitigate my risk factors. Of course that’s not cheap with an orphan disease, there’s no data, and more trial and error. I know the conventional wisdom is that preventive care really doesn’t pay, but I find that hard to believe. When you can help a patient lower their blood pressure, cholesterol and CRP with nothing more than lifestyle and dietary changes, when you uncover underlying sensitivities that contribute to these and save on meds, treatments and follow up, when the patient requires fewer visits to address the same problems, and can better maintain their own health… I can’t imagine that isn’t cheaper in the long run.

Posted in Kaiser Permanente, Politics, health care | 2 Comments »

Ask Not

September 15, 2009 by orphanus

Some might wonder what drives a patient to think they have anything more to add to the health care discussion. Certainly the blogosphere is full of wannabe medi-bloggers. Why is what I have to say unique or edifying?

It’s a valid point. I may be just another voice in a vast ocean. However I present a few viewpoints that are underrepresented, and certainly, you don’t see this much of a… medical train wreck all wrapped up into one single, solitary human.

I’m a young cancer survivor, I have a rare disease (also known as an orphan disease), I have a child with autism, and my experience with health care reads like a defensive medicine textbook.

One of the more egregious examples happened 4 years ago. Five years after a PAP showing AGUS, and countless followup PAPs, I finally got an endometrial biopsy, and the course of my life changed. I was diagnosed with cancer.

I was admitted to Kaiser for a hysterectomy on a Friday night. Several hours later I was moved from recovery to a room with 4 beds. Over the course of the 8 days I spent in the hospital, it was full except for the last day. A steady stream of women rotated in and out, in part due to Kaiser’s drive-through mastectomy policy (some women were discharged in as little as 12 hours, others in 24).

For the most part the care was acceptable. Everything was done according to schedule, I had help on and off, and I tried very hard not to have to summon the nurses.

Unfortunately near the end of my stay, I went to the bathroom, and as I began to stand, a gush of fluid poured from my incision. It just continued to leak copious amounts, as I tried to figure out exactly what was going on. The floor in the tiny bathroom was covered in fluid, and I was afraid if I tried to move, I’d slip and fall. I didn’t want to sit back down on the toilet, not sure if it might contaminate my now rather open wound.

I stood there, half squatting, my legs shaking, and decided to pull the emergency pull cord. I hear the reassuring “ding, ding, ding”. I waited for a few minutes, since it typically took the nurses 2–3 minutes to answer the calls of my suitemates. Unfortunately there was no answer. I eventually pushed open the door, and tried yelling, since my room was closest to the nurses station. After yelling for a few minutes, my roommate, recently diagnosed with late stage breast cancer, exhausted from large doses of phenergan, woke and asked me in a groggy voice thick with sleep what was wrong. I told her my incision was leaking and I needed help. She pulled her emergency cord. We heard both chimes alternating, “ding ding, ding ding”.

Still no answer. I can’t hear anything at the nurses station but the call button chiming.

My legs burn with fatigue, and I’m terrified, unable to actually see the incision, not sure what could possibly be happening. I yell out the door asking my neighbor if she can reach her phone. I ask her to press 0, and call the hospital operator. She does, and the call goes out over the PA for a nurse to report to the nurses station.

Slowly I hear the shuffle of feet, and eventually “yeah, yeah, what’s the emergency?”. The bathroom door opens, and the face peering in at me turns a ghastly shade of gray. She screams “oh my god!” and runs into the hall “I need help in here, hurry, hurry!”. A bounty of nurses flood in, supporting me, help me to bed, get me cleaned up and changed, and finally, all is okay.

It would be easy to scapegoat the nurses, but anyone who has lived in Los Angeles knows that Kaiser nurses have not had an easy ride. Statistically, outcomes like mine are rare, it likely wasn’t the first thing in the mind of the nurses when they heard the call. They certainly were wonderful to me when they realized the extent of the problem. It’s not news that hospitals are understaffed.

Unfortunately, the evolution of health care delivery, and now the battle over health care reform has painted the patient as the enemy of good care, overusing resources, demanding drugs, not following instructions, suing frivolously. This culture of blaming the patient seeps out in the most unexpected ways. Health care providers don’t expect the worst, because the worst is rare. This leads to the worst kind of waste of all: the missed opportunity.

A lot of verbiage gets thrown around about partnering and teaming and patients being involved in their care. Until they are seen as equal partners, opportunities will continue to be missed. Money will continue to be wasted. Cancer patients with slam-dunk signs will continue to be misdiagnosed in spite of advocating for themselves. People with rare diseases and conditions will continue to wait decades to be treated, suffering needlessly, and developing complications.

This is the true reform of health care. Effective reform will remain elusive, until patients are seen as a valuable and important participant of the health care team.

Posted in Kaiser Permanente, The Blame Game, health care | 1 Comment »

I’ve Had It

September 11, 2009 by orphanus

The latest salvo in the health care reform debate comes from a regional Blue Cross, Regence.

All across the Pacific Northwest are these obscure billboards containing a URL and some obscure health care reference, and not much more.

I finally remembered the wordy website, and looked at it. The gist is, if we patients could simply deny our own care, millions could be saved! Lawsuits would diminish! Health care would be affordable! Care would improve! Birds would sing, horns would trumpet, yadda yadda…

In my less than humble opinion, of all the egregious fallout from the commoditization of health care, nothing tops the change in focus away from patients, people, real human lives, toward cost.

Of course wise use of limited health care funds is vital to improving care. Wasted health care money is wasted care. Unfortunately for the patients who most need intensive care, what is or is not wasted care is mostly a question of hindsight. There will always be some “waste”. It’s unavoidable.

Unless you’re of the opinion that some lives are more valuable than others.

This shouldn’t all fall on the patient. We have this terribly paternalistic system of medicine. We don’t have the option of treating ourselves. We don’t have the option of prescribing our own medicine, ordering our own labs and imaging studies, and in our current system, it’s very difficult for most people to get a referral, or a second opinion. Yet increasingly the cry is Patient Responsibility! Question your doctor, check your meds, watch your costs, file your claims, be your own advocate. While you’re sick.

This chorus is in contrast to the other truism pouring down on our heads: ignore Dr. Google, the internet is wrong, trust me, I’m the doctor (nurse, psychologist, teacher, etc.), those researchers don’t know what they’re talking about since they never see patients (umkay), this is too complex for you to understand, why do you want to know so much? On and on go the confusing and conflicting messages.

Patients plug along trying their best to navigate an impossibly convoluted system, when really it should be those inside the system helping us to figure out how to protect our health. Of course we patients have a role, but to tell patients malpractice is their fault because they weren’t advocating for themselves, and then villainizing and marginalizing patients for being active participants in their own health care is all too common.

Patients can not be the only player required to take responsibility and bring about change. All those corners pointing at patients as being the problem with our broken health care system need to look at the fingers pointing back at them, and see where they can bring about the change they’re rallying for.

I’m so tired of everyone pointing at the patient. We all need to work together, and we all need a place at the table of health care reform. Patients especially. The professionals have an important perspective in what constitutes effective reform, but if patients aren’t at the table too, the professional perspective is meaningless.

Posted in health care | Leave a Comment »

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