The continuing drama that is “the best health care in the world”

I’m still dealing with the ongoing drama of coordinating my dad’s medical care – he just got a feeding tube put in, as he stopped eating and drinking as a result of recent oral cancer surgery (and as a result of the delirium, post-surgery, that’s been going on for a good month+ now, and that no doctor bothered running tests until we demanded it yesterday) – and the absurdity of the fact that it doesn’t entirely seem clear if any of his doctors is actually in charge. So, my posting is going to be a bit off this week, and already has been.  Sorry in advance (and after the fact).

At some point, I will do some longer posts about all of this, as I find it fascinating – and horrifying – that my dad has some of the best health insurance in America, as a former corporate executive back in the days when health insurance was really good, yet, the roadblocks to care that we’re finding, you’d think he was the first elderly man in existence to have a medical condition.

Let’s not forget the ‘Republican Health Care Plan’Dealing with my dad’s condition has been nothing but reinventing the wheel from the beginning.

Trying to figure out which doctor is in charge at every step of the way (and it’s not that they’re all in charge, it’s that none of them are).

Trying to determine who should have done the tests about the sudden onset of delirium that dad had right in the middle of chemo, and which still hasn’t gone away a month later (not only didn’t they do any tests post- onset of delirium, but the doctor didn’t even bother showing up when my dad suddenly went nuts in the middle of the chemo, even though mom asked for the doctor, and another patient witnessing what happened was so disturbed that my dad went from sane-to-nuts on a dime that she gave my mom her name in case we wanted to sue).

Another question that’s been hell getting answered is what kind of home health care might his insurance cover (god forbid anyone give us an answer on THAT one, lest we actually use it – Aetna Medicare Advantage, j’accuse, but I’m sure they’re all just as bad).  We’re only starting to get to the bottom of that one, and I’ve been inquiring for weeks.

For the “best health care in the world,” in the “best country in the world,” I feel like I live in a developing country.  No one will tell us what you’re supposed to do when things like this happen – even when you have what is supposedly “great” insurance.  Imagine what the care the other guy gets.

alan-grayson-health-care-2Hell, the hospital even ran out of blankets last night, so dad was shivering in bed, with my brother trying to scrounge up extra sheets in case that might help. Seriously, ran out of blankets?  Do we get a discount for a room without blankets?

Or another example, my mom is the one who was supposed to tell the doctor that a man who hasn’t eaten in ten days should perhaps be getting more than just water through an IV drip.  My mom was the one who finally had to step in and say, hmm, if he hasn’t eaten in ten days, maybe we really need to get a feeding tube in.  And a nurse visiting our home to check his vitals, and teach mom how to do the IV, was the one who just happened to ask why dad wasn’t even getting glucose via the IV drip, let alone nutrients or electrolytes, when he hadn’t eaten in days?  Good question.

And now we’re dealing with the drama of trying to find a skilled care facility to hopefully help dad recover over the next few weeks without literally dragging mom, his primary caregiver, to the ground with him when he incessantly tries to walk around the house at all hours with his apparently-chemo-related delirium, and wobbliness brought out by the surgery, not eating, and having lost around 40 pounds.

Oh, and to add to the fun, mom fell in the hospital today – something I warned the hospital social worker about yesterday, that 83 y.o. mom is hardly the person who should be propping my dad up as he wanders around the house aimlessly, and that at some point they’re going to fall together.

Fortunately, after a visit to the emergency room, mom appears to be okay and back in charge (though we’re all in charge at the moment, with mom, obviously).  Of course, mom’s visit to the emergency room didn’t stop the hospital from calling my sister – since mom was apparently waylaid – and attempt to discharge dad anyway.  Where were they going to discharge the sometimes-delirious newly-installed feeding tube man to?  Who knows.  Fortunately I got a hold of mom, who was ticked, and who put the cabosh on that one.  And we just found out that the feeding tube isn’t even feeding him any food yet – apparently there are some issues – and they were going to discharge him to my sister today?  Seriously?

I wish I knew all of this – just what a mess it is dealing with a sick loved one in our health care system even when you have excellent insurance – a few years ago when were going through health care reform (not that it would have addressed this). But it’s a crime how insurance companies (and doctors, apparently) have no system in place for you to actually get the coverage you paid for, let alone find out what kind of benefits you just might be eligible for.

alan-grayson-health-care-3

The “Republican” health care plan? Try the AMERICAN health care plan.

We’re training an 83 year old woman, with a failing memory and other problems, how to administer an IV and work a feeding tube, in addition to how to deal with a man with hopefully-temporary delirium, because his insurance doesn’t really cover any of this – or maybe it does (and there’s no apparent easy way to find out).

The irony is that I always thought the old joke about how America has the best health care in the world – “if you can get it” – meant “if you can afford it.”  Apparently, money isn’t the only obstacle.  And even planning ahead and having good insurance isn’t the only obstacle.  There’s also the bureaucratic obstacle to getting health care – from your doctor(s) and from the insurance company - even if you can afford it.

Welcome to the best health care in the best country in the world.  It’s to die for.


Follow me on Twitter: @aravosis | @americablog | @americabloggay | Facebook | Google+ | LinkedIn. John Aravosis is the editor of AMERICAblog, which he founded in 2004. He has a joint law degree (JD) and masters in Foreign Service from Georgetown (1989); and worked in the US Senate, World Bank, Children's Defense Fund, and as a stringer for the Economist. Frequent TV pundit: O'Reilly Factor, Hardball, World News Tonight, Nightline & Reliable Sources. Bio, .

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  • ArthurH

    Things could still be worse. When I visited my Grandmother in the hospital, she cried about the care she was receiving. At her age she needed help to get out of bed so when she had to relieve herself in the middle of the night she pushed the button for a nurse but one never came. By morning she had soiled herself in the bed and the orderlies that had to change the bedding harangued her for the situation. So I went about things logically. I pressed the nurse button and got a reply, “What do you want?” I said nothing, I just wanted to see if the button worked. Grandmother asked, “Who are you talking to?” She could her the muffled voice coming over the intercom. So I went to the nursing station on the floor to explain the situation and the head nurse almost bit my head off, saying she and the other nurses weren’t my Grandmother’s personal servants. Further inquiries revealed that the hospital had been acquired by a corporation and to boost profits had trimmed the nursing staff, resulting in the remaining nurses handling a workload way bigger than they could handle. I swear I got so angry that if in the hour afterward the hospital’s CEO appeared before me I would have punched him in the nose so hard his head would have landed in the vicinity of Sao Paulo. That is the so-called best medical system in the world. Best for profits; lousy at providing care to the ill. The owners of modern hospitals must have taken a Hippocrite’s oath my mistake.

  • SpringTexan

    ooh, great tip, PROVIDED you get a chance to be alone with it

  • SpringTexan

    Well, er, actually my brother didn’t survive, but . . . I get your point.

  • hauksdottir

    Oh, John, I’m so sorry. {hug} And another for your mother!

    Pain, delirium, and 10 days without any nutrition? That is criminal neglect. And, since your father HAS health insurance, there is no excuse possible for that sort of mistreatment. None. Nobody deserves that callous disregard and unprofessionalism, even if a pauper. Somebody who has paid expensive premiums into a good plan has an expectation of getting at least basic care (such as being fed(!!!) and their condition monitored.) A home health nurse would have noticed the delirium if the hospital failed to. (Keep that other patient’s name. If a regular person notices someone flipping out, a medical professional should surely have observed the situation, and done something about it.)

    Sue and make a major stink about it so that others avoid that hospital. Unless major money and bad publicity is involved, that hospital and all those lackadaisical doctors and nurses won’t change a thing… and who knows how many people will die from lack of care?

    Courage!

  • Krusher

    I’m so sorry about your dad, John. My brother and sister and I had to deal with many of the same issues when my dad had cancer (oral cancer, too, coincidentally) in terms of nobody seeming to be in charge or knowing what was going on once he was hospitalized. A lot of hospital care ends up being done by the family, and the family has to constantly be on alert to advocate for the patient.. This was true for us 23 years ago, and apparently not much has changed. My thoughts are with you and your family.

  • JamesR

    Jeez. At least your brother’s ex and he probably shared microbial flora and fauna, so no harm no foul. Except the whole concept…

    I remember asking for antibacterial ointment as I removed a pressure bandage once, in a room as I was told I could do, and they couldn’t give me any without the (or a) Doctor’s orders and no one was to be found. I was so tempted to just walk out to the drugstore across the street I could see from my window and buy some and come back. So aggravating I all I could think of was the Godawful crap I could’a caught there, ironically, for sake of officious neglect. It worked out thanks to Nature and Luck, but since I ALWAYS take Bacitracin etc with me even visiting a hospital. For any reason. !? Like visiting a field hospital tent without Carbolic Acid. Eek. It’s like LARPing. (LARPing for Life) Good God.

    Contrasts with the French hospital John blogged about he had his eye done at, smoking allowed !? different customs and a language ( / culture) barrier, but at least they got the necessary things right, and cheap. (inexpensive.) Glad you all survived.

  • SpringTexan

    After that horrible experience a friend was in a hospital and I was very relieved that she actually got mostly excellent care over months of major problems. I was so relieved and grateful after the other nightmare. So it’s really not uniform, there are decent hospitals and awful ones and probably more in the middle.

    But yes, when you talk about this John, you touch many buttons in the many people who have been through these nightmares.

  • SpringTexan

    I really identified with the “ran out of blankets” stuff, at the hospital my brother was moved to a room without a pillow and his ex-wife asked for one. The nurse didn’t produce one within an hour and his ex-wife asked could she get one for him where were they. The nurse said there were none and she would have to roam the hospital looking in rooms till she found one she could take so no the ex-wife couldn’t do it and the nurse could not do that till she had time. Took 6 hours.

    After his death I wrote every hospital board member and filed a JCAHO complaint.

  • SpringTexan

    At the Tenet-owned hospital we were asked to swab my brother befrore surgery (I refused but his ex-wife did it) and to help transport him on the gurney (which I did) to get to surgery. Seemed incredible but they didn’t have staff.

  • SpringTexan

    Yes, after my brother was in the Tenet-owned hospital I found many similar stories of agony and neglect in Tenet-owned hospitals. BTW Jeb Bush was on their board at that time, may still be, I dunno.

  • SpringTexan

    This is not helpful or responsive. Shut up.

  • SpringTexan

    It is worth asking. But some hospitals have NOTHING like this. When his ex-wife asked about who to escalate a complaint to in a horrible Tenet-owned hospital my brother was in, she was told no one. The social worker at the same hospital was horrible and would not help with his going to hospice even though they wanted to kick him out into a nursing home. We called the hospice on our own and they got him out of there, but no help from social worker. The place was brand new, horribly understaffed, cruel and indifferent. I told him we would get an ambulance and get him out of there and he and ex-wife declined partly because he was in great pain post surgery and moving would have hurt, but partly I found out later that they were worried about reimbursement issues since Medicare advantage (not for the ambulance, I said I would pay).

    There actually are some good hospitals and most are not as bad as the one my brother was in but no having good insurance won’t guarantee you ANY type of good care. My profound sympathy.

  • JamesR

    Yes, but they were really bitter and pithy seconds!

  • JamesR

    I was told that too, years ago when I had my dad hospitalized then put in a rehab for weeks. Unfortunately, the Doctor who was supposed to be in charge did not fill out the required paperwork and Medicare and insurance did not cover it and we got sued for the bill. Paperwork – the attending / admitting / in charge Doctor does that! Find him and make him sign. Be nice until you’re sure he’s done what he has to.

    So sorry this is happening to you and your family (John) – but at least there are probably internet forums where people have had similar experiences – more than I found years ago – also those dedicated to the peculiarities of your particular hospital / chain / corporation. I found that the corporate parent of my rehab facility shat on patients regularly. All after the fact of course. (Manor Care) Avoid them or watch them like a hawk if you must use them. And do not sign anything that ‘guarantees payment’ when you admit – makes them even lazier billing insurance I was told. Made them not come after me, but they did come after dad. So sorry this happened, and that you couldn’t have flown him to France like with your eye (bitter) LOL

  • lynchie

    I am a Canadian and nothing in healthcare is perfect. Not like fixing a broken pipe. Things happen, infections take hold, but me experience growing up there and the treatment my sister had in Montreal tells me this is a plant to combat the bad comments on American Healthcare. My sister went to emergency at a suburban hospital and on diagnosis was transferred immediately to the University. She met with a team of surgeons who went through the treatment they were suggesting and gave options. Long story short she had surgery and is doing fine. Her out of pocket expenses were $0, not a dime. Treating illness is not a slam dunk because of other issues, etc. But here in the U.S. you are a number (insurance card) and if that gets tapped out they immediately lose interest and fail to see you, have nothing to offer etc., etc.,

  • HelenRainier

    Thanks, Pete.

  • http://adgitadiaries.com/ karmanot

    “People have no idea how bad it is.” Indeed! Don’t get me started on Dana Farber.

  • http://adgitadiaries.com/ karmanot

    Social worker? Medical Navigator?—standard in CA hospitals now. Remember those terms, if only to ask.

  • http://adgitadiaries.com/ karmanot

    Oh yes, the twenty second walk in and $300.00 bill is a golden goose.

  • goofinoff2day

    The University Of Chicago center for advanced medicine does research on Oral Cancer and might be able to steer you in a better direction with a local referral or inclusion in a study.

    Unfortunately it has been my experience that once the Oncologists get their money for the treatments they really are not there for you to deal with the toxicities. Many die from the toxicities/ iatrogenic side effects. They tell you what they are (the risks, side effects etc.) but they don’t tell you that they will not be there for you to the same degree when you have to deal with them. You see there are no codes for reimbursement for caring.

    Some joke that the bottom performers of medical graduates become dermatologists. I think they should make room for the Oncologists. People have no idea how bad it is. I had a man tell me that his family would be better off if he died because he has better life insurance than medical insurance. I imagine his oncologist hears that all the time.

    I am sorry this has happened to you and your family….”Do no harm” indeed

  • http://adgitadiaries.com/ karmanot

    Reads like a troll plant. I’ve been hospitalized under the British system and received excellent care.

  • http://adgitadiaries.com/ karmanot

    Excellent!!

  • http://adgitadiaries.com/ karmanot

    Is that ever common: envision Kaiser in a large city. An emergency comes in needing an immediate trache change , Kaiser staff can’t find one anywhere in the hospital. Patient dies later that night from complications.

  • PeteWa

    Hey Helen, as Jake noted I did indeed mean TPN.

  • HelenRainier

    Jake, that makes sense. Thanks!

  • arcadesproject

    Oh. I was not in a third world country. I was in a large hell- hole in the northern tier of states. Friend is ‘well insured’.

  • arcadesproject

    Visit friend who is having foot wound treated in hospital. Dressing has to be changed regularly. Nobody shows up to do change. I volunteer to help. Need scissors to undue dressing. Request scissors. This hospital floor has no scissors. Go figure.

  • JakeAZ

    TPN, I think is meant, total parenteral nutrition. Feeding tube with full nutrients.

  • lynchie

    You are dead right. Penalty for not being in the system which is still controlled by the Insurance companies. They control what they pay for, who gets coverage, how much for insurance, etc. etc. Nothing has changed but now you MUST have coverage. Look everyone I am sure wants health insurance but if you are at minimum wage $7.25 you are making $15K a year before SS, Medicare and any taxes (state, local, federal) where do you get the money for the premium and more importantly where do you get the money to cover the extra bills from hospital/doctor most employer plans make the person covered pay the first $2K my company just changed to the first $3K and co pays for visits, drugs, etc. So on minimum wage you have coverage but you still can’t afford to get sick.

  • Bcre8ve

    Have you asked to see a social worker yet? In our hospital, they sent someone to make sure we had a viable home situation for when we left the hospital, even making sure we had a plan to get someone who was immobilized out of the house in case of a fire.

    It sounds like, in your case, that they are not even doing what is minimally required before discharging a patient, like making sure their medication is stabilized, they are eating, etc. I am horrified by the level of care your family is receiving (and a situation like this obviously requires taking both of your parents health into consideration).

    Also, are all of those doctors actually required for his care? Every time one of them walks into his room and looks at that chart, you are being billed. It is notorious in the hospital industry, and the reason that for most people, the last three months of their life will cost more in medical care than the rest of their life combined, even though those doctors are not actually performing any actual service, as you can plainly see.

    I would demand that only one doctor be allowed to see your father, and that all decisions be made by that doctor. You have no obligation to have any doctor other than his admitting physician to be able to treat him. I did the same while in the hospital, while my doctor was on vacation, and the replacement tried to hustle me out of the hospital on the DL while he was gone. The hospital freaked out, sent the head of nursing to negotiate, but they can’t force me to see a doctor I didn’t want to see, and they knew it.

    You have the right to demand the coordination of care that comes with only one doctor being able to make decisions on your father’s case, and should demand that it happens. Refuse to allow any other doctors into the room until you have that primary physician (which doesn’t seem to be much of a change from your current situation, as they do not appear to actually be delivering any actual services). This doctor should be the one who admitted him in the first place, or, if not to your liking, one you choose yourself.

    They will bully you, but patients do have right, and yours are being horribly trampled.

  • lynchie

    I call bullshit

  • ctiberius

    As a Canadian who has watched plenty of loved ones die in the Ontario health care system, your father would probably not be alive at all today if he was in that system.

  • Bcre8ve

    I had Kaiser through a set of major surgeries, after a long treatment period, and lengthy stays in a hospital, home for a year in a hospital bed, and with home health aids, and I couldn’t have been happier. My doctor would even stop by my house on his way home to check in on me periodically. And my costs were never more than the usual office co-pays when I would go to the facility for my office visits!

    The waits for seeing a “regular” doctor could be a little lengthy, and they were generally running far behind on appointment times, but once you learn to navigate the system, it was OK. The coordination of care was also very helpful.

    Kaiser is no longer in my state, but, if given the choice, I would choose them every time.

    That said, you also have to be your own advocate, know and stand up for your rights, and also know that what any doctor says to you, you are in no way required to do it, and if it seems wrong, or contrary to best practices, you must say no and either get a second opinion or articulate to the doctor exactly why you think they are wrong.

    But everyone should remember – a doctor decides what is “wrong” with you, on average, in about 30 seconds. You need to go in armed and ready and put all your major concerns and symptoms on the table in that 30 seconds, because after that they are generally not listening any more, just planning a course of action..

  • Lthomas320

    Exactly!
    I’m right there with you.
    Preach it!

  • Bcre8ve

    Demerol is notorious for causing hallucinations, especially if taken for an extended period of time – it happened to me while I was in the hospital. Demerol, the brand, is the drug meperidine, and will cause a build-up of something called normeperidine in the liver when taken for long periods, causing the dementia.

    There is also something with valium/benzodiazepines called the paradoxical effect that when taken causes you to have the exact opposite effect than what others experience, causing you to become agitated and uncomfortable in your own skin, which I also experienced in the hospital.

    Medications are a good place to start when looking for reasons that someone is failing to thrive or unable to reason in the way they did before treatment.

  • Joan

    Medicare will cover a minimum of 21 days of rehab (PT, OT and speech therapy) in a skilled care facility if your dad has been hospitalized more than 3 days and was clearly stronger and more ambulatory or physically functional before the hospitalization. You need to speak with the hospital social worker about his options. His cooperation in therapy is important though – will his delirium interfere with his therapy? Hopefully you can get a handle on that soon. Also, the hospital your dad is in sounds worse than the one my mother was in recently (and she was there for a month and also needed a feeding tube). If he has to remain hospitalized, maybe you could find a better hospital. Do you have any friends who are MD’s in the region where your dad lives? They know which hospitals are good for which conditions, and which ones to avoid.

  • lynchie

    John:

    Had some thoughts last night thinking about your dad’s situation. These are in no particular order

    Take a toothbrush and paste and brush his teeth at least once a day. If he has false teeth make sure they are clean and have a clean glass with some soaking liquid to keep bacteria growing in the glass. If he is not mobile take his legs and arms through their whole range of motion and do it for as long as he can tolerate. Time it and do it longer and longer each day. Make sure he has books, games, television sothat his brain stays active. Get him out of bed at least twice a day. As soon as he canhave soft food bring him some pureed food that he likes from home, put it in a blender and have one of those heat gels packs to keep it warm. Get him to communicate with everyone. When you
    go to the hospital. Check in with the nurse for the floor and the nurse on duty with your father. Question them on his daily wash, was he communicating, did they get him up, did they clean his teeth, did he have anything to eat (even on feeding tube). Did the doctor come by to visit…what did he put in the patients notes. check the notes morning and night for all things the staff might add. Have an appointment with his surgeon at least once a week and prepare a list of questions to get answers to, it doesn’t matter how trivial they seem. Ask every time for his prognosis, worst case and best case. Make sure you are contacted before any change in medication or treatment is allowed. Don’t just haveyour mother because she is under too much stress. Question any changes to his treatment and ask why and if there are alternatives. Check with the hospital to see if they have a patient activist who can help check in. Find out if there are support groups who meet so that the patients can share what is happening. Go on line and check the doctor’s rating which is available for every doctor. Read what his other patients say about him. Get an emergency number to reach him. Plan your visits at
    various time so the staff don’t plan around your visit. If you don’t getthe answers you want go up the chain of command. Remind everyone that your Dad is a person and the bills are being paid. If you are extra billed remind the surgeon/hospital/ that they have been paid a fee by insurance, that is what they negotiated. Because they want more is not your problem, negotiate with the insurance company.
    Insurance reimbursement for health care is no different than for you
    car. If you have an accident the body shop and insurance agree to a
    cost to fix the car. The body shop doesn’t get to send you a bill for an
    extra $1,000 cause they want more. If there is anything you are asked to pay for you or your mother don’t recognize ask for a copy. When my wife was being treated the tried to have other doctors collect money and they never saw my wife, the billed for tests that were never done (my wife was a registered nurse with a college degree and was clear headed almost till the end). If the insurance is fairly good everyone jumps on the bandwagon. Insurance companies never question the bills unless it is over the amount negotiated with the provider. In short Question Everything.

  • lynchie

    Great advice.

  • ezpz

    It’s insane that this same story gets repeated over and over millions of times year after year all over the country and no one seems to notice.

    Sadly, people do notice when it happens to them, but if you mean that the PTB don’t notice, well, they’re paid not to notice. Insurance, Pharma, the private hospital industries are huge and they make hefty contributions, aka bribes, to keep things as they are or allow them to get worse (for us).

    As I said in my other comment, Medicare has standards and regulations and consistency. You know exactly what they’ll pay, not *if* they’ll pay.
    This is why if Obama really wanted to transform health care, he would have gone for single payer or medicare for all. It would have been much cheaper and much more efficient. Obviously, that’s not what he wanted. No, he was beholdin’ to those who put him in office, and I don’t mean ‘we the people.’ As a result, we got this POS legislation that will not help at all, regardless of what they tell us or how much they spend to promote the ACA. I wish it weren’t so, but things WILL get worse when it goes fully into effect.

  • HelenRainier

    Pete, what is TPM? All I can come up with is Talking Points Memo and I scarcely think that is correct in the context of your post. Thanks!

  • arlingtonrob

    Uhhhh…Max,

    John knows this…he’s being sarcastic.

  • Bomer

    It’s horrible and frustrating to have to put up with all of this. It shouldn’t be this way; it really shouldn’t.

    I hope you and your family get through this and that your father makes a full and speedy recovery.

  • goulo

    Good luck to you and your family. I have read so many similar health care stories of bureaucratic frustration & profit being the clear priority over patients.

  • Max_1

    John,

    For the “best health care in the world,” in the “best country in the world,”

    Please open your eyes and recognize that what you believe is NOT reality.
    America is NOT the best provider of health care.
    America is NOT the best country in the world.

    .

  • Sugapea

    John, Sorry to hear of the difficulties you’re dealing with. Now days, everyone with a friend/relative in the hospital must become an ‘advocate’ watching the patients medical care like a hawk!
    My mid-70′s husband went into this hospital for a Gall Bladder problem, they filled him with so much medication he appeared to be losing his mind! I called the hospital, asking to speak with the head Doctor, telling him my husband was mentally clear when he entered the hospital, yet now seemed totally confused/disoriented, something very unlike him…as a result of that call the problem totally went away. It’s very true…hospitals consistently over-medicate elderly patients so they are less demanding and require less attention. Don’t hesitate to make big waves of indignation at the quality of your Dad’s care, be a squeaky wheel…that’s the only way to get proper medical attention now days!
    Give special love/attention to your Mom, this must be an extremely stressful period for her after many years of your Dad being the strength. Your Mom will need the support and leadership of you and your siblings now more than ever before.

  • Hue-Man

    Is the legal paperwork all in place? For example, are you waving a Durable Power of Attorney (or equivalent) in doctors’ faces when you tell them what they should be doing? (I know I shouldn’t be giving YOU legal advice!) Sometimes paper is the most effective weapon when dealing with bureaucrats.

    Here’s a link to a 2011 study on seniors’ health care (p. 68 has a brief description of one approach to co-ordination of health and social services for seniors).prepared by the Canadian Institute for Health Information which “… collects and analyzes information on health and health care in Canada and makes it publicly available. Canada’s federal, provincial and territorial governments created CIHI as a not-for-profit, independent organization dedicated to forging a common approach to Canadian health information.”

    The first half is mostly statistical background while the second is more focused on health issues – falls, depression, medication, retirement homes, emergency rooms, influenza, palliative care, etc. Most provinces are working to keep seniors at home and out of hospitals and emergency rooms – health outcomes are better and costs are lower.
    https://secure.cihi.ca/free_products/HCIC_2011_seniors_report_en.pdf

  • judybrowni

    Is your Dad a vet?

    My father resisted going to the VA, but when my brother finally pushed it, did the paperwork for him, the care (home health care included) has been incredible, compared to private insurance.

    He’s 89 and he gets a nurse visting every two weeks to check on him — or more often, if needed — a free hospital bed, oh so much more. But most important, there’s someone in charge, his doctor, his nurse, not random care.

  • emjayay

    Social worker? Medical Navigator? In my experience (family, but across the country from me) I never heard of either. And if these people are there shouldn’t they be there introducing themselves and discussing things all the time without you having to find out they exist and go find them? No, because if one of these people exist they probably are dealing with a thousand patients each.

  • emjayay

    The other side of the picture is the wonders of free market capitalistic medical care. All the entities who are trying to collect from the insurance company charge five or ten times more than they expect, hoping that this time it will somehow fly and they’ll clean up. Everyone in the system is either an overworked underpaid employee at the lower end or a walking business trying to seize as big a piece of the pie as possible at the upper end. There is nowhere for anyone to be in charge. It’s maybe not that bad when your needs aren’t too complex, and you are able to be the somewhat informed consumer. But when neither, there is no there there.

    Like I said before, it could be that deals like Kaiser Permanente (being a, you know, actual Health Maintenence Organization and being all in one place and everyone sharing the same electronic records and everyone on salary) does a little bit better. I wouldn’t be surprised if other countries with a tradition of some sort of universal health care system (Tim, you there?) also handle these situations better. It wouldn’t be all that hard to do more than nothing.
    It’s insane that this same story gets repeated over and over millions of times year after year all over the country and no one seems to notice.

  • emjayay

    Hey, ease up on hippies. Except for that one.

  • http://adgitadiaries.com/ karmanot

    True, but I discovered over the years that while I was alone with the clip board I would write in disclaimers.

  • nicho

    Most medical providers today give you a sheaf of 20 pages or so to sign on your first visit. You just initial and sign where they tell you, because it would take two months and a law degree to actually read them. Among them is a stipulation that you will submit to arbitration by a corporate arbitrator, rather than sue. If you don’t sign, they won’t treat you.

  • http://adgitadiaries.com/ karmanot

    We have to tell the stories and not let the collective experience and wisdom we carry lie hidden.

  • http://adgitadiaries.com/ karmanot

    Damn, how many times have we seen such horror in our lifetimes? The level of grief we carry can be translated into the power of the human stories we read right here. I hope John and/or Gaius do a major piece on this.

  • http://adgitadiaries.com/ karmanot

    Excellent advice. One thing that’s absolutely essential is to check the meds, cross reactions and side effects. The family can do this if the medical staff won’t. Drugs like mood stabilizers, fentanyl and many ‘pain’ meds can have psychotropic effects—-particularly with the aged.

  • http://adgitadiaries.com/ karmanot

    Absolutely right on!

  • PeteWa

    great advice.

  • charles newman

    John it is important to really realize that most so called “professionals” really don’t care and are there for the check. His care in the nursing home now will have to be watched like a hawk so he doesn’t develop problems from neglect by the staff there. Be sure he is kept clean and shaved even if you have to bring the Norelco and do it yourself. The staff members know how often you visit and will leave patients in soiled linen and unshaved until they figure you are coming. Then they will try to shave days worth of beard from an elderly man whose skin might be suffering from dehydration etc. I had an uncle who would look like he had a hundred cuts all over his face every time we visited. My Dad figured out was happening to his brother and went ballistic. We were paying $3600.00 a month for his care. I can’t begin to tell you the condition the poor souls were in who were Medicaid patients. Many appeared as though they hadn’t been cleaned up in weeks. Be sure and get him up and walk him around to a visiting room or wheel him in a chair. The staff will let the patients lay in bed period for months. Got to keep moving so his joints stay flexible and to cut the risk of bedsores. Pay close attention to how his skin looks and his eyes. You have to because they won’t. Try to make visits at meal-time if you can. Look at the “food” and if you wouldn’t eat it then neither should he.

  • slightkc

    First, my heart goes out to you and your family… I hope you can find an Advocate to help you thru this mess of doctors, hospital, and insurance obstacles. I was my mom’s Advocate for her hospital care, and it took staying with her 24 hours a day to ensure care was given properly and promptly, especially with the meds. I’m convinced hospitals purposely over-medicate the aged, just to keep them pliable and quiet.

    While Mom was admitted due to a broken hip, she had the same “instant insanity” that your dad is experiencing. Like your dad, my mother hadn’t been eating, and if she did manage something, it was sugary junk like a donut or a cookie.

    After her hip replacement surgery, she immediately fell into what I called a “paranoid dementia.” Prior to that her cognitive skills were normal, but afterwards, it was like Alzheimer’s on steroids… with a huge dose of paranoia thrown in for good measure. And the nurses acted like this was normal!!!

    For my mom, the answer turned out to be a combination of drugs and lack of proper nutrients (which had thrown her electrolytes completely out of balance). I made them take her off fentanyl, lose the valium, and give
    her demerol only in normal dosages for her pain levels, AND ensured she
    got nutrients into her — first thru IV solution and then by ensuring she ate – she came back to “normal” within a day.

    My hunch is your dad has experienced something similar to my mom. This is where having an Advocate can really help you in convincing the docs (and the whole “system”) to do what is right and proper by your dad.

    If nothing else is indicated due to the chemo and his unique situation, I suggest looking into this type of scenario. If you want or need anymore info on it, feel free to contact me.

    Wishing you luck and the strength of Atlas – going thru this feels every bit like carrying the weight of the world on your shoulders. Hopefully you’ll find it eased soon…

  • PeteWa

    thanks ezpz, sometimes it’s harder to not be bitter than at other times.
    I am fortunate to have an extended support system of friends.

  • ezpz

    So sorry for for the ‘horror stories’ you’ve endured.
    And yet, you’re not bitter, just stronger and wiser, it seems.
    The reason you didn’t sue shows what a truly beautiful soul you are.
    Didn’t mean to get all mushy there, but I had to say it.

  • DetroitSam

    I am so sorry to hear about your dad and mom.
    What type of hospital is your father in, local community or large medical center? Will you be filing a complaint with the state medical regulation agency? I hope so.
    As someone who has had two extended hospitalizations in 6 months and who consumers a lot of health services (for the past 40 years) I am glad to say that I have had very good care from nurses, physicians, rad and lab techs, the people who delivered food, even the people who cleaned the rooms.
    My prayers are with your and your mom and dad.

  • shanob

    Never any follow through. That is the problem, paying top dollar and getting terrible services in the American medical system.

  • Bill_Perdue

    We all need a human medical system based on Medicare for all, socialized medicine, or single payer. That means comprehensive, nearly cost free medical care for everyone and government control over price gouging and cost cutting that effects people’s health.

    Karmabots advice is very good. I think another name for the same health care workers is a hospitalists, someone who coordinates health care during hospital stays.

    You’re doing exactly the right thing right forcefully inject yourself into day to day medical decision making which will get you flagged as people who are watching out for each other and watching the decisions of health care organizations.

    Medicare is being cut and cut and cut again and doctors, HMO and insurance companies are limiting treatment options so having a good medical consumer attorney on retainer.

  • shanob

    So sorry you are going through this.
    Your post is giving me flashbacks to ’85-’90 doing the same dance of ‘advocating’ for a very sick loved one.
    This has to change, it is inhumane to the patients, the caregivers and the family. Every system is so challenging….all of it so stressful.

    My best wishes to you and yours…

  • PeteWa

    John, I dealt with a similar issue years ago at MD Anderson in regards to cancer, delirium and lack of eating.
    unfortunately, the doctors wouldn’t listen to me as I would explain to them every day that my partner (I never know the right word to use in this case, sigh) was not eating.
    instead, they’d ludicrously take him at his word, the guy talking to phantoms, performing imaginary tasks in bed as if sleepwalking, when he would tell them that he had been eating…
    but he had not been eating for days, and poorly for a while before that, regardless of my nagging / begging / appeals to reason.
    I would ask the doctors to put him on TPM, and they would look at me with derision.
    They would walk off contemptuously.
    at the time I wondered if they were just assholes working in their meat factory, or if there was some element of homophobia in play as well.
    It did not take too long for him to develop edema.
    just another issue to deal with on top of the cancer and the pneumonia that they were negligent in treating.

    I know that you (as you stated in another comment, as well as post through the years) tend to be opposed to what you consider the so called American litigious culture – I hate to say it, but all you need is a few more life lessons and you will finally see it for what it really is – life lessons I hope you never have to learn.

    when my ex (again, there are still not adequate words) died, I was informed by our lawyer that I had a slam dunk case if I wanted to pursue legal options.
    the only reason I didn’t was because I was fairly sure that the only thing keeping my mother-in-law remotely sane (and alive) was her erroneous belief that the doctors did everything they could for her son.
    this is hardly my only horror story.
    the American health care system has long been a travesty.

    Again, I hope that your dad recovers, and that you and your family can find strength and peace in this trying time.

  • http://AMERICAblog.com/ John Aravosis

    Yep, emailed you, thanks

  • ezpz

    Best wishes to you and your family, John, in dealing with these challenges. It can become overwhelming on so many levels. Be sure to remember to take care of you, as sometimes we can become so involved that do actually forget.

  • http://adgitadiaries.com/ karmanot

    It is the personal narrative (as those above testify) which can bring such power and humanity to the issues posed by our broken health systems. Your writing will have great effect I’m sure.

  • http://adgitadiaries.com/ karmanot

    I’m glad things are getting better.

  • http://adgitadiaries.com/ karmanot

    Eating Broccoli and Quinoa has added seconds to my life.

  • ezpz

    Exactly. I documented everything — date and time of the conversation, rep’s name what was said, everything!

  • Monoceros Forth

    Ugh. Every story about medicine or health insurance brings this hippie-dippy stuff out.

  • http://AMERICAblog.com/ John Aravosis

    Well, doesn’t mean I can’t write about it to a few million people ;-)

  • http://AMERICAblog.com/ John Aravosis

    Really?

  • http://AMERICAblog.com/ John Aravosis

    He was at home, not the hospital. But he had stopped eating and drinking because the radiation treatment was so painful – apparently that’s a common problem with oral cancer. And it seems that other than putting him on water IV, there was no follow through on what else to do, including finding better way to nourish him, until mom started calling around last Thu and saying we have to get him a feeding tube – it didn’t come through until yesterday, Tuesday.

  • http://AMERICAblog.com/ John Aravosis

    And this is VERY helpful. I think at the moment things are fine as he’s being discharged tomorrow. The next step is dealing with the nursing home where he’s due to spend some time to hopefully get better. Yes, the hospital social worker as the first person who helped us figure out what kind of additional care we could get him.

  • http://AMERICAblog.com/ John Aravosis

    I actually didn’t know about Keith’s dad – I knew he died, but didn’t know he had problems with the treatment, etc.

  • http://AMERICAblog.com/ John Aravosis

    Yeah, I’d have told them to go f themselves and good luck collecting. Though I must admit that I kind of like your response :) But I agree, the system is out of control.

  • http://AMERICAblog.com/ John Aravosis

    Oh my god, sorry to hear about all of that. And yeah, I realize that there isn’t always a science to the science – meaning, doctors can’t find and cure everything, but still, so much of this seems to be a system that’s so big that it’s unmanageable.

  • StraightGrandmother

    John, you are in Illinois, right? I am an expert in this, I have answers for you. I can help you enormously. Send me a direct message in Twitter.

  • http://AMERICAblog.com/ John Aravosis

    Oh yeah, I’m well trained in being the guy who asks for the supervisor – mom and dad taught me well :)

  • http://AMERICAblog.com/ John Aravosis

    Jesus. I tend to be opposed to the whole litigious-american culture, but this kind of thing makes me wonder if it’s not the only answer. That, or moving to Canada

  • http://adgitadiaries.com/ karmanot

    Never give up and keep copies of all the medical files.

  • http://adgitadiaries.com/ karmanot

    excellent

  • http://adgitadiaries.com/ karmanot

    I am so there with you!

  • Bomer

    I quit working in 2006 to look after my grandmother full-time. She has assorted health problems with the major ones being a liver transplant patient and a diabetic. The hell that is the American health care system is really beyond words.

    Doctors that do not bother to read her medical file. Prescribing drugs that interact with each other because they do not bother to read the list of medications in her file (seriously, why bother to ask for a list of medications that you are taking if you are not going to read it?); at one point she ended up in the hospital with liver rejection because some of her medications were counteracting the immunsuppressants she’s on. Every time they add or alter her medications I always have to watch her like a hawk because, invariably, they throw her blood sugar all out of whack and she ends up delirious and 3 steps away from being in a diabetic coma.

    Currently she’s been having breathing problems and doctors keep running tests and giving her inhalers while scratching their heads because the tests keep saying that she should be breathing just fine. We’ve been trying to get in contact with her lung doctor since February and so far we have received two call backs from his nurse (and only after weeks of hounding them) only to be told that she’ll take a message and that the doctor is out on vacation.

    Trying to get in touch with her liver transplant coordinator is a joke too. It takes weeks just to get them to call you back, if you are lucky. Hell, most of the time we don’t even know who her coordinator is since it’s a new person every time we call.

    And that’s just part of the b.s. with the doctors and doesn’t even touch the insurance b.s.

  • bejammin075

    There are a few doctors who have an almost 100% cure for heart disease. Heart disease, our number one killer, has already been thoroughly defeated. It’s called a “whole food, plant-based diet”. Dr. Caldwell Esselstyn and Dr. Dean Ornish both use this dietary approach effectively. One of those two above (I can’t remember which) approached the medical insurance company to get them to reimburse for his type of treatment. This dietary treatment was (and is) very effective, uses no drugs or surgery, so it’s very cheap. The side effects are all good. After much back-and-forth, the good doctor still couldn’t get an answer from the insurance company whether they would reimburse insured patients or not. Finally, the doctor was told, look, the surgeries and drugs are expensive, and they make the pie bigger, and when the pie is bigger, we make more money, so fuck off.

    The “whole food, plant-based diet” is simply this: strive to eat as close to 100% whole, raw or minimally processed plants, and eliminate meat and animal products, and eliminate processed and refined foods. Eat a wide variety of plants: greens, nuts, seeds, legumes, fruits, etc. Refined and processed foods to avoid include the obvious (fast food, chips, snacks) but also include bread and olive oil (yeah, it’s better than butter, but it’s not actually healthy – eliminate it!).
    I’m healthy, but I decided to try this diet after reading about it. It takes some getting used to, not being able to use many old recipes, and having to experiment with new foods and recipes. But I have to say, the more purely I stick to eating nothing but whole plants, I feel great all day, every day. And I have the certainty that I can never develop heart disease or diabetes, and vastly reduce my risk of cancer. If we all did this, it would reduce national medical costs by 80%, not to mention help greatly with global warming. By eliminating meat and animal products from my diet, I’ve done the equivalent of five drivers switching to the Prius, and I’m not contributing to the 10 billion animals who are destroyed in the US for our meat production.

  • ezpz

    Insurance companies thrive on NOT paying claims and on being ambiguous.
    I’ve read and found from my own experience that the “industry” will arbitrarily pay or not pay claims with no rhyme or reason, no consistency. That’s how they make their money. They really have nothing to lose by not paying. They’re betting that people won’t bother filing appeals – and they’re right about that; many just don’t bother with the appeal process.

    For the small percentage of those who do file appeals, they may still be turned down, in which case, it’s likely that the patient will not take it to the next level. So bottom line, it’s a win/win for the insurance industry. Even if they end up paying on the first or second appeal, they’ve gotten away with NOT paying on the many claims that were not appealed.

    I’ve also found that each time I called about the same issue, it seemed that I would get a different answer. And more than once, my former insurance companies just stopped paying on claims that they had consistently paid before. Yes, each time I called and got a different rep, I also got a different answer. And that’s by design, too. I didn’t give up. I jumped through the hoops they set and I won.

    John, unfortunately, you need to keep calling again and again until you get your answers. I’m sure you know that if you don’t get the answers you’re looking for, ask for a supervisor.
    They’re betting you’ll get so aggravated that you’ll give up. Don’t.

    BTW, Medicare is the exception to the arbitrariness of the insurance industry, as they have standards and regulations and consistency.

  • eahopp

    Is it too cold-hearted for me to say you should have taken the urn and dumped regular charcoal ashes (Instead of your wife’s) on the billing agent’s desk? Or would that be too much mayhem?

    I am certainly sorry.

  • lmsinca

    So sorry you’re going through this John. It absolutely sucks getting sick and watching a loved one put through the ringer, and I’m not just talking about your Dad here.

    I got sick last year with an intestinal bacteria and was sick for 7 months and it took five to get a diagnosis. When I was in the hospital about three months into it they tried to tell me I had pneumonia. I kept saying no, I really don’t think that’s what I have. Thankfully the antibiotics they put me on actually killed the bacteria so I survived………………just lucky I guess. I was on the verge of being septic.

    Anyway, I’ve been through similar events with both my parents and it’s truly awful so just know we’re thinking of you. I don’t comment very often but read everyday and have come to really respect you perspective.

    And yeah, I don’t really think the ACA will fix this.

  • cole3244

    capitalism sucks!

  • http://adgitadiaries.com/ karmanot

    I want to say, “major like’ but, that’s not the appropriate word. My god, it’s just incredible what a hell is American health care.

  • lynchie

    John:

    I have written on here about my wife’s battle with cancer and how callous, how uninvolved the hospital, doctors are. They provide no information, they don’t tell you about hospice services and they extra bill you for anything they think isn’t covered by the insurance company. The doctor could hardly be bothered to answer questions when asked by me or my kids. She passed away in October, 2 years ago and I got a bill for $15,000 for a chemo treatment given the following April. When I questioned the charge, which was refused by the insurance company, the person in billing asked me if i was sure she was dead. Prick that I am I drove to the hospital with the urn with her ashes (we were returned to Canada to spread them in June). I slammed that down on the desk and asked if that was enough proof. Be prepared to be frustrated, pissed off, ready to commit mayhem, and understand the insurance company can cut off coverage at any time. They love getting the premiums but sure don’t like paying for any medical services. The doctors are just as bad it is big business, billions of dollars are pumped in to cancer research and we are no closer today. ‘
    Why should a chemo treatment cost $15,000 a week which no one can afford. I am convinced there is so much money involved in treatment they don’t want a cure.

  • http://adgitadiaries.com/ karmanot

    “Dealing with my dad’s condition has been nothing but reinventing the wheel from the beginning. John, our hearts go out you and your family, but also our experience as advocates for the past two decades. You MUST get an experienced advocate or someone from the family to monitor every day your Dad is in that hospital. Remember Keith Olberman’s ordeal with his father? Same situation.
    Recommend: 1.)Contact the hospital social worker immediately. He/she should be able to guide you on In Home Services. See if the county in which your parents live has IHSS. it depends, but Medicare should cover those expenses and private insurance the rest. You can inquire about a live-in or visiting caregiver, or for more serious care—a visiting nurse. 2.) Inquire if the hospital has a ‘Medical Navigator.’ Navigator’s are invaluable, they coordinate all aspects of the care, its staff, nurses. doctors. Mine has been absolutely invaluable. Investigate other hospitals who have more advanced services. Forgetting to feed your Dad borders on malpractice and criminal neglect. You are well qualified to manage all this, but don’t let it overwhelm you. You have lots of support out here.

  • Rob

    Ugh.

  • nicho

    Unfortunately, with a Medicare Advantage plan, you go where they tell you. And you’ve already signed papers saying you won’t sue them.

  • voltronforce

    John I would sue the hospital if they had not fed a family member in 10 days. I would suggest a new hospital.

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