What I Learned About Healthcare as a Patient: The Delivery System Has Got to Change

8/1/11Follow @xconomy

You can read all the books and news stories you want on the U.S. healthcare system, and conclude it’s profoundly messed up. But sometimes there’s nothing so enlightening as first-hand experience.

I’ve been thinking about how awful U.S. healthcare is the past couple weeks, based on my latest experience as a patient. It’s made me wonder if there’s any lesson to be learned for the biotech business. And here’s what I keep coming back to: Healthcare innovators who want to prosper need to find new ways to engage with patients, and really help them, outside the usual channels offered by the hospital-insurance-industrial complex.

OK, let me back up and explain where this is coming from.

Just having finished up my usual morning run on Friday, July 15, as I was getting ready to jump in the shower, I was hit with a major back spasm. Intense pain shot up my spine, as my lower back muscles flexed and wouldn’t let go of my nerves. This has happened twice before, so I knew what to do. I carefully hobbled about three steps into my living room, and laid down flat on the floor with my feet propped up on a chair. My wife got me a couple of ibuprofen and an ice pack. I figured I’d lay there a few hours, let everything relax a bit, and probably shuffle off to work that afternoon with some stiffness.

But this wasn’t like those minor spasms of before. A few hours later, the pain was so intense that I lost consciousness when trying to stand. When I woke up on the floor, I figured, that was kind of scary. Time to call the doctor.

And that’s when things really got worse. Partly because I’m young, have no chronic conditions, and exercise fanatically, I’ve never developed a relationship with a physician. I’m fortunate to have very good health insurance, which I figured was there in case I ever got in a serious car accident. But this episode was concerning—I’ve never fainted before—so I figured it would be wise to call the 24-hour nurse hotline to see if I needed to get emergency help.

Sure enough, the operator at this organization (which shall remain nameless), told me to come in to an urgent care clinic to get checked out. So I manage to hobble into the passenger seat of a car, as my wife drove.

Once there, it couldn’t have been any more clear what this “urgent care” place was about—getting my insurance papers squared away. When that was taken care of, there was nothing urgent about this place, and it certainly didn’t care. The waiting room only had a couple other people there on a Friday afternoon. One nurse asked me a few basic questions, the same questions I had already answered an hour earlier over the phone with this same health organization.

After about a half hour, I got to see the doctor—in this case a physician’s assistant. I didn’t carry a stopwatch, but this exam lasted less than five minutes. The doctor shined a light in my eyes to see my pupils were OK. Then she had me stand up, put her hands on my hips and lower back, and asked me try to lean left, right, forward, and back. I could move a couple inches in every direction. I was able to move my legs, and didn’t have pain shooting down either one—everything was concentrated in the back.

“Yep, it’s back spasms,” she said. She prescribed a muscle relaxant, the addictive painkiller acetaminophen and hydrocodone (Vicodin), and told me to rest all weekend.

It should be fine in a few days, she said. Happens all the time.

OK, like a wiseguy, I asked, how do you know that’s really it? “From the physical exam,” she retorted, sounding unamused. Then I really crossed the line.

“Once this heals, what can I do to prevent this from happening again?” I asked.

She looked at me as if I had just uttered a phrase in Klingon. “There’s nothing you can do. These things happen all the time,” she said with a furrowed brow. Dumb question, I guess.

And then, like a flash, she was gone. No further instructions, like call her if things aren’t better by Monday. It was just time to go the pharmacy, then home.

All I could think about on the way home was … Next Page »

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  • Jerry Jeff

    Interesting article that largely confirms my own results. I’ve basically given up on visiting the doctor, despite paying a lot for mandatory health insurance. I’m hoping to get by with a visit every time there’s a new president. But my kids go more often for routine stuff, and it is just infuriating to deal with the system. Qliance sounds interesting. Please encourage them to expand to Boston.

  • Jane Multhopp

    I have had three loved ones in the hospital this year. When I would arrive for the day, the nursing staff would disappear. I had to watch my mother with dementia, my father after his operation, and another relative go through the dt’s. The nurses spend a lot of time entering data in the computer system. They don’t visit rooms as regularly as in the past. A hospital patient not in ICU needs a friend or relative there all the time, or they are on their own.

  • Alexander Zayachkov

    My first experience with back spasm induced black outs was very similar to yours with one exception, it occurred a few months after the original injury. I’d been rear-ended on I-75, and although I felt okay at the time, by the next day I could barely move. My Osteopath, who sees me every ten years whether I need a check up or not suggested a chiropractor after the initial consult and obligatory anti-inflammatory prescription.

    I bent over to pet my cat before heading to work one morning and when I arrived at the office 45 minutes later I could barely walk. I knew that my day was filled with project meetings and felt secure that I would make it through the day. During the first break in meetings I hobbled to refill my coffee, and tried to walk through the mounting pain – until I collapsed as you did. My Clients called an ambulance and I was whisked away, although the medics refused my request to turn on the sirens, so to make light of my fear I made siren sounds on the way to the ER.

    I concur with your experiences with both the Medical-Industrial Complex (until I read your article, I thought I was the only person that used the term), and have since opted out of all third party payment systems for health care. I’ve run the numbers and fully appreciate what a ponzi scheme it is – over $250,000 in premiums for my daughter and I over 18 years for less than $20,000 in services. And let’s not forget deductibles and cop-pays that further reduce services the third party pays for.

    I’m convinced that the third party payment system is the root of most of the systemic ills of the US Industrial Medical Complex. There are no market forces at work. It used to be people paid for their own care, and if they couldn’t afford a treatment, they would have to live without it or find alternatives. Physicians and other health care providers competed to care for you (based on their performance and fees).

    Now when I visit health care providers I let them know up front I’m a cash customer. It usually means a 20-30% discount over what the insurers pay, because they don’t have to wait months for payment, and there is virtually no administration required.

    I’ve also consulted with some of the largest providers of Health Care Insurance, and know better than most, that with the Medical-Industrial Complex aligned against you, even if you have the best Health Care Insurance available, a catastrophic medical situation will bankrupt you. All your premiums are simply redistributed wealth.

  • http://ctachibana.com Chris Tachibana

    Luke, I hope your back is better—sounds painful, distressing, and all-around unpleasant. For another example of a different health care model, check out Group Health’s patient-centered medical home. It emphasizes prevention, longer doctor visits and follow-up, patient involvement, and interaction with a primary care team in person, by phone, and through email.

    A 2010 CNN video here: http://edition.cnn.com/video/?/video/health/2010/04/29/cohen.happy.doctors.cnn

    Disclosure: I know about this because I work part-time for Group Health Research Institute.

    Hope you’re out running again soon.

    Chris

  • http://www.mendelspod.com Theral

    Luke,

    Hope you’re feeling better. And thanks for writing about your experience. Saying we want something better is the best catalyst for change.

    Theral

  • http://www.rhstrategic.com John Raffetto

    Good story, Luke. Back pain is the black hole of health care… millions of people suffer from it and billions of dollars go into addressing it, and much of it is a guessing game. I hope yours is resolved quickly!

  • http://www.xconomy.com/author/ltimmerman/ Luke Timmerman

    Thanks for all the well wishes. My back is feeling much better now. I wonder what would happen if more people shared their own personal stories of interactions with the healthcare system.

  • Pam Tufts

    Luke, thanks for bringing attention to our national disgrace. Chiropractors having been saving my back and neck for 40 years. And, they are awesome providers of ‘prevention’. Listen to your Chiropractor.
    And, please – don’t let the subject go away. Where is the public outrage? (byw, Qliance is awesome.)

  • http://www.xconomy.com Bill Ghormley

    Glad you’re getting good care, though you were forced through “alternative” channels.
    Backs are the toughest — usually need imaging technology, as you did, to “see” the CNS pinches and bulges — which provides an educational tour of one’s own anatomy, maybe a newfound way to visualize and focus your healing powers — but they really hurt, and cannot be worked through like a muscle cramp.
    Hope you have smooth sailing through effective therapies, and keep us posted (;-> All the best

  • Paul Romesburg

    Hope as well your back is feeling better – I’m a fellow sufferer.

    I had a near identical situation about 4 years ago. Out of nowhere I got muscle spasms between my shoulderblades that was so severe I couldn’t move and it was choking off my breathing. After an ambulance ride I lay in an emergency room soaking up as much morphine and ativan as they would give me. The e-room doc came in and after telling her 15 times I wasn’t in a car wreck and didn’t fall off a ladder she looked at me like I had three heads and sent me packing with scripts for three different meds and advice of bed rest.

    After a full week to recover and a good six months of constant pain, I finally decided to impose on a personal friend who is also an orthopaedic surgeon. Five min in the office and an X-ray later we say the disc in my back pushing in to the spinal chord – Bingo. Why imaging was not ordered when I was lying on the bed in the e-room, broken, is beyond me.

  • b_e

    Wow, everyone here’s got back pain. Mine turned out to be a tumor that has since relapsed twice. As you can guess, I’ve had quite a bit of first-hand experience with the medical system. I have two prescriptions.

    First, we really need to move away from the fee for service model of medicine. I’ve had to stay extra days in the hospital because the pharmacy was understaffed, and I couldn’t get my chemo started in time. Who pays for the extra stay? Not the hospital and not me, but you, my fellow health insurance customers. A better model is payment for whole care, which motivates the providers to give treatment in a way that doesn’t send the patient back to the hospital. It’s telling that there was a Frontline segment last week in which a hospital ended up doing this voluntarily for it’s worst repeat visitors when they were too destitute to afford their own care, simply because at that stage it was the provider’s own money on the line.

    Second, the insurance system needs to change. People like to complain that a health insurance company acts in its own interests rather than the patient’s. It has been my experience that this is false: In reality, health insurance companies cannot even act in their own best interests. I have had several claims that were challenged and gone back and forth between the company and the provider, and in every case, the claim was eventually paid. That’s extra work out of my premiums and shareholder equity that is simply wasted. We’d be better off having a baseline national (or state, I don’t care) health insurance plan with no limits on purchasing supplemental care. I’ve also had multiple instances where I’ve confirmed with an insurance rep that a hospital is in-network for my procedure, only to find out later that this information was simply false.

    But I do have to say in light of Alexander Zayachkov’s comment above, that I have been a “winner” in the insurance game, with much, much more getting paid out to providers than paid in through premiums, and with no financial hardship even after multiple catastrophic events. I even bought a house last year after my second bone marrow transplant.

  • http://www.linkedin.com/in/markedwardminie Mark Minie

    Good story and hope you are feeling better soon…

    One of the big problems is the medical community itself…individual doctors and institutions such as hospitals actively resist independent and objective evaluations so that there is no good way for the non-medical public to evaluate quality of care…in fact a consistent theme in your story and the comments about it is that people are reduced to getting such information based on random pings of their social network…a friend’s recommendation, an associates story, etc…There is no good way to evaluate things and thus no consistent way to decide what constitutes good medical treatment. As an example of such resistance, see-

    Administration Halts Survey of Making Doctor Visits
    http://www.nytimes.com/2011/06/29/health/policy/29docs.html?ref=healthcarereform

    The lack of good and trusted centralized information sources about medical care has huge impacts elsewhere…close to home here in Seattle, for example, is the WA public’s resistance to vaccination-

    WA leads nation in parents opting out of vaccines
    http://www.seattlepi.com/news/article/WA-leads-nation-in-parents-opting-out-of-vaccines-1676690.php

    Patients and parents are left trying to evaluate information in an area where they have no technical or scientific expertise and have no trusted source to turn to to make good evidence based decisions…in the case of vaccination, putting everyone at very significant risk…

    Without objective centralized quality sources of information and QA monitoring that are available and understandable by the typical member of the general public, how will all of our great projects ranging from Electronic Medical Records to determining what drugs work and what ones don’t work to improve things?

    Finally, one other observation…consistently, all of the above comments indicate that if the first contact with the medical community had resulted in using readily available medical imaging technologies (X-rays or CT/MRI scans etc…) the cause of the problem could have been immediately and correctly identified and effective treatments prescribed…instead, most of the first contact doctors seem to “guess” what is wrong and then hand out prescriptions to powerful drugs with significant side effects to patients who will then go on to use such drugs with little or no follow-up or monitoring…clearly not a good thing…further complicating things is an apparent distain of the doctors and nurses towards patients who ask questions of any sort, thus making it unlikely that any sort of medically useful and critically important feedback will occur…why tell the doctor that the meds aren’t working when they will sneer at you and dismiss you as being “uncooperative” or worse…?

    This was a brave and important post, Luke, and thanks for doing a good job as a reporter in both sharing your experience and also brining the topic up…

  • http://mylocalhealthguide.com Michael McCarthy

    Luke, your story is a good example of why approaches like Group Health and other center’s patient-centered medical home should be adopted, where you have a team that knows you and can follow your care up with appropriate treatment.

    Back pain though is a stubborn problem. Unfortunately, a recent review by the Cochrane group finds that the evidence that spinal manipulation therapy (SMT) is better for the treatment of chronic low back pain is very weak.

    They reviewed the best randomized controlled trials available and found:

    “High quality evidence suggests that there is no clinically relevant difference between SMT and other interventions for reducing pain and improving function in patients with chronic low-back pain.”

    Here’s the full abstract of the paper, which appeared in the Cochrane Database of Systematic Reviews.

    Spinal manipulative therapy for chronic low-back pain.

    BACKGROUND:

    Many therapies exist for the treatment of low-back pain including spinal manipulative therapy (SMT), which is a worldwide, extensively practiced intervention.

    OBJECTIVES:

    To assess the effects of SMT for chronic low-back pain.

    SEARCH STRATEGY:

    An updated search was conducted by an experienced librarian to June 2009 for randomised controlled trials (RCTs) in CENTRAL (The Cochrane Library 2009, issue 2), MEDLINE, EMBASE, CINAHL, PEDro, and the Index to Chiropractic Literature.

    SELECTION CRITERIA:

    RCTs which examined the effectiveness of spinal manipulation or mobilisation in adults with chronic low-back pain were included.

    No restrictions were placed on the setting or type of pain; studies which exclusively examined sciatica were excluded.

    The primary outcomes were pain, functional status and perceived recovery.

    Secondary outcomes were return-to-work and quality of life.

    DATA COLLECTION AND ANALYSIS:

    Two review authors independently conducted the study selection, risk of bias assessment and data extraction.

    GRADE was used to assess the quality of the evidence.

    Sensitivity analyses and investigation of heterogeneity were performed, where possible, for the meta-analyses.

    MAIN RESULTS:

    We included 26 RCTs (total participants = 6070), nine of which had a low risk of bias.

    Approximately two-thirds of the included studies (N = 18) were not evaluated in the previous review.

    In general, there is high quality evidence that SMT has a small, statistically significant but not clinically relevant, short-term effect on pain relief (MD: -4.16, 95% CI -6.97 to -1.36) and functional status (SMD: -0.22, 95% CI -0.36 to -0.07) compared to other interventions.

    Sensitivity analyses confirmed the robustness of these findings.

    There is varying quality of evidence (ranging from low to high) that SMT has a statistically significant short-term effect on pain relief and functional status when added to another intervention.

    There is very low quality evidence that SMT is not statistically significantly more effective than inert interventions or sham SMT for short-term pain relief or functional status.

    Data were particularly sparse for recovery, return-to-work, quality of life, and costs of care.

    No serious complications were observed with SMT.

    AUTHORS’ CONCLUSIONS:

    High quality evidence suggests that there is no clinically relevant difference between SMT and other interventions for reducing pain and improving function in patients with chronic low-back pain.

    Determining cost-effectiveness of care has high priority. Further research is likely to have an important impact on our confidence in the estimate of effect in relation to inert interventions and sham SMT, and data related to recovery.

  • http://www.Qliance.com Norm Wu

    Glad to hear you’re feeling better Luke and that you had a great experience with the chiropractor. OTOH, the urgent care clinic experience is one that unfortunately is all too common in our current health care system.

    Sounds like you need Qliance. There is a great friends and family free trial if you are interested. Check out http://www.qliance.com/gift and tell them Norm sent you.

  • http://www.xconomy.com/author/ltimmerman/ Luke Timmerman

    Norm–thanks for the comment. I have to decline the offer, but I do think Qliance is doing fascinating work and am glad to see you out there putting this new model to the test.

  • Helena Watson

    Two comments

    a) – isn’t passing out a reason to go to the ER, not the urgent care?

    b) – I am lucky enough to be able to afford the PPO that my employer offers and I use UCSF exclusively for all my health care – I could not be happier with with the level of service from the docs, nurses and support staff. And some of my insurance dollars go to support education and training of future doctors.

  • nanostring

    Luke,
    In light of what you wrote, would you consider NWHF’ focus on Innovative Models for Delivering Care to be something good for people in the Pacific Northwest?
    http://nwhf.org/focus_areas/background/innovativemodels/

    If you think so, then maybe you can help them; and no I don’t mean by giving them money. You probably know what I mean…

    Get well!

    Krassen

  • Sean

    Luke, your story illustrates that medical professionals — like mechanics, cops, nannies, carpenters, etc. — vary widely in the quality of the work they do.

    To avoid bad care, you need to first figure out what kind of doctor you need, and then find a good one. Google is your friend in this regard, as well as for checking a diagnosis that sounds fishy.

    Glad you’re feeling better.

    -Sean

  • http://www.linkedin.com/in/markedwardminie Mark Minie

    @Sean-good points, but how can you know/judge the quality of the information you find on a Google search? Michael McCarthy points towards a great and trustworthy resource, the Cochrane Database of Systematic Reviews, but how many non-technical users would know the difference in quality between the Cochrane resource and some other random hit on Google? How would you be able to judge who is a good doctor and who isn’t-surely posts on social networking sites won’t do…in some cases, these are very thinly disguised marketing campaigns and not objective evaluations of any quality…

    A quick look at YouTube (now the second most used search engine on the Web) on the topic of vaccination will give you an idea as to the magnitude of this problem…whose information is to be believed, and what information is so erroneous as to be dangerous, not just to the individual but to society as a whole?

    A classic problem for everything…how do you distinguish “information” from “misinformation” on the Web? Google may be my “friend”, but my “friend” may not know any better than I do what is high quality information and what is dangerous junk…

  • Jonathan

    Sorry to hear about your poor back and even poorer initial medical evaluation. Based on your presentation of paralyzing pain and loc you should of had an image taken immediately and a referral to a neuro/ortho specialist. So many points of entry into the medical system are now determined to not refer you to a specialist, then write you a script for some pain reliever, and give you a firm handshake. I agree with some of the earlier comments that if possible, one should do some dd into who they see first. A friend founded Seattle based http://www.avvo.com which now list reviews on many doctors. Perhaps that is a good starting point for assessing who you go too first.

  • allison

    It is hard to know what to do when you’re in pain, but passing out from pain would logically require a trip to the ER, not the “Doc in a Box” place that you went to. You were obviously steered wrong by your insurance company.

    A friend of a friend was in an accident (sideswiped by a car while she was on her bike), and went to one of these places. They actually asked her if she wanted an x-ray of her knee, which was bloody and swollen!

    You get the care that you select, so this should be a warning to all consumers. Establish a relationship with a doctor even if you are healthy, so that when you need it, you have a reliable medical professional to treat/advise you.

  • Ted

    Hi Luke:

    I’m sorry to hear this, as I’ve gone through back problems for coming up on 16 years, starting at age 27 or so.

    Back in ’96, I thought the chiropractor helped. Over the years, however, I found “relapses” didn’t seem to correlate with whether or not I was getting regular “adjustments.”

    About 5 years ago, I went through a series of spasms, resulting in multiple MRI’s and a further replenishing of my pharma stash. Even with good health coverage, it ran around $2000 out-of-pocket. Fortunately, as part of this, I was prescribed a ‘plain old’ physical therapist. After about 8 weekly sessions, I left with a pocketful of stretches and exercises. I’ve only had one bout of actual spasms, since. It was, hands down, the best time and money I’ve spent dealing with this problem.

    Here’s a few things I’ve learned:

    Do not lie down when your back spasms. It doesn’t help – it continues to stiffen and spasm. Regular gentle movement will eventually calm it down, but you need to keep moving. Stay standing, walk, hobble, crawl, whatever, just don’t stop. Remind yourself that even the most excruciating episodes will be over in about two weeks.

    In fact, it takes me about two weeks almost every time. I’ll be sensitive to relapse for 3 – 4 weeks afterwards. Avoid the triggers diligently (sleeping on your stomach, twisting the upper body, shoveling, slouching, etc…) and ease into your exercises (everyone has some). Good posture is helpful – work on it when your back doesn’t hurt, and you’ll have something to work on when it does. Sleep on your side, with a pillow between your knees.

    Treat back spasms like a cold. They will persist for about the same time, regardless of whether you medicate. I don’t think that 2g a day of ibuprofen, even if you make the stuff, is conducive to long-term health…

    Once you learn to recognize and treat it as a recurrent problem, and not an acute injury, life gets a little easier.

    My last one hit just as I was preparing to board an 12 hour flight to Europe (a work trip). I walked around in the back of the plane for about half of the flight, did isometrics in my seat the rest of the time, and I tightly regulated my movements to avoid triggers. A week later I was back in the states doing well, and I made all of my meetings. I never would have pulled that off a decade ago.

    Regards,

    -t

  • http://xonomy Elaine Ignots

    I’m a nurse, I’ve been one for 29 years. First, Urgent Care Centers aren’t really set up to spend 45 minutes with a patient for back pain, they’re to fix you and allow you to go see your regular MD (IMO). Secondly, to the person who wrote that the ambulance service wouldn’t use sirens to transport him after his back pain experience-REALLY?? Do you know sirens/lights are for LIFE AND DEATH problems? I don’t think back pain qualifies. People in other cars have to move for ambulances with lights/sirens, and you know what happens with sudden moves in traffic. Thirdly, to the person who complained about the nurses doing paperwork instead of patient care-well, I totally agree with you there. But it’s not MY fault that the hospitals keep piling on paperwork, it’s because of JCAHO, and surveys like Press-Ganey, from patients about their “hospital experience”. ANd what do people think is important about their hospital experience? It’s getting their juice on time, getting good meals, seeing the nurses/staff a lot. It’s not about “oh, that nurse really knew her meds and gave me all my correct meds and knew the side effects and mechanism of action and contraindications”. It’s not about “oh, that nurse realized the doctor wrote an incorrect order and she had to spend 10-15 minutes calling him/her to fix it, then had to write a telephone order, then had to call the Pharmacy/x-ray etc to fix it”. I work in a fairly un-busy unit, but I’ve worked at really busy places, and most people who aren’t medical professionals have NO IDEA what nurses do, and you have NO IDEA how many times nurses prevent doctors from harming you. You also don’t seem to realize that you are not the only patient when you’re hospitalized and sometimes other people are sicker than you, or have an emergency and getting you your orange juice or rounding every hour isn’t on the high priority list when you spend 1+ hours trying to start an IV on a baby. So before complaining about health care professionals, find one who works on a busy unit, and go follow them around for a 12 hour shift (the normal shift nowadays) and then come tell me your tales of woe.

  • Bruce Robie

    Hey Luke,

    Glad you wrote this up. I hope you’re still doing the exercises and stretches. They will keep you going.

    But your title is faulty – there is no system. Systems have elements that work together. Which elements of your treatment worked together? And since they didn’t, you went on the quest for a ‘guru’. You climbed a few bad hills, then finally a good one with a chiropractor on the top. But still not a system.

    There are signs that things are heading in the right direction – the medical homes, the vertically integrated hospital systems (insurance, hospital, MD groups, outpatient,…). Some spots, like UCSF(?) are there. Others still have a way to go.

    In the meantime, keep exercising and avoid the ‘system’ whenever you can!