END OF THE LINE

In 2015 a Ph.D. and MD team of researchers published a paper, "The Myth Regarding the High Cost of End-of-Life Care," that struck me as very interesting. One important component of debates on healthcare costs is the perceived high cost of treatments that do not meaningfully extend life or improve the quality of life – the perception, in other words, that doctors throw every procedure and medicine available (at patient insistence) at people who are unavoidably terminal.

The Aldridge-Kelley paper is one of just a few proper studies I've come across that characterizes it as a myth (see also this University of Michigan analysis). Their conclusion that end-of-life costs comprise about 13% of all healthcare spending and thus is not out of line with common sense expectations is contradicted by data thrown around in every healthcare policy debate I've ever seen. In fact, a Medicare study argues that end-of-life spending on healthcare is unchanged over 20 years.

This is an issue, in other words, in which we seem to be influenced heavily by anecdotal evidence ("Well, my grandmother…") and numbers sourced from groups like insurance companies or issue activists with an agenda. Of course Insurance, Inc. likes the narrative that they're forced to cover pointless procedures on dying people.

In fairness, my take on the methodology of the studies mentioned above is that they all define health care spending in a way that is likely to under-count true spending. They exclude the cost of prescription drugs, for example. The estimates they offer could reasonably be characterized as conservative. However, their underlying conclusion remains persuasive in the context of the really big medical expenditures that naturally accompany the end of life – hospitalizations, hospice or nursing home stays, major surgeries, implants, drugs administered as an inpatient, and so on.

The news item about Barbara Bush brought this point back to mind. She's 92 and has reached the point at which she and the other people involved have concluded that she's dying and medical care is futile now beyond providing palliative treatment. And really, isn't that what usually happens? How common is this straw man really, the dying person who demands putative miracle cures right up to the very end?

In some ways high end of life costs are unavoidable. That trip to the ER after a major car accident and the ten surgeries that follow are the cause of mortality and they can't be distributed throughout life. Hospice stays and hospitalizations are other examples of incredibly costly things that aren't going to happen unless…well, unless you're in failing health. And for every single one of us human beings, failing health is a process that begins at different points but always ends with death. Many of us are lucky enough that "failing health" and death are relatively proximate on our timeline. Whenever it happens, unless we die of unnatural causes, it's very likely to be expensive. Nothing about that is new.

It is worth remembering that the available data does not support the argument that end-of-life care is disproportionately expensive. A cynic might even wonder if it is yet another attempt to blame the individual for spiraling costs of the ridiculous system – "industry" is a better term, in fact – that so many Americans in positions of power seem dead-set against changing. The way people use a badly flawed system is a symptom, not a cause, of those flaws.

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31 thoughts on “END OF THE LINE”

  • I would argue that the way people use a flawed system is both cause and symptom.
    Good piece. Thank you.

  • Hospice care is quite a lot cheaper than hospital care, since it’s palliative and not focused on preventing death. It’s available from Medicare but drastically underutilized because Family members have difficulty accepting the end and care models typically don’t acknowledge the need to transition to hospice. By and large though it’s vastly more endurable than the extended hospital stay and its atmosphere of crisis. We’re far too acclimated to the imperatives or doctors and not our own judgment of when enough is in fact enough.

  • The latest health care statistic I saw was that 50% of health care spending is expended on 5% of the people.

    It doesn't take a Harvard MBA to conclude that the way to save money is to spend far less on the unhealthy 5%.

    Some percentage of the remaining 95% will want a cover story as to why health care spending on the 5% has been reduced. The End-of-Life narrative will satisfy most of them.

  • @Deggjr—

    That sounds an awful lot like the rationalizations that eugenicists use. Interesting how there never seem to be enough “resources” when it comes to spending money on people we deem ‘unfit’.

  • Also/Too: 3% of America’s gun owning population owns over half of America’s guns, and we all know how we’re required to stumble all over ourselves to buy them cookies all the time. But we *like* when people die of preventable shit…Priorities, amiright?

  • When does "end of life care" start. With the 87 year old that starts dialysis and lives a moderately decent life for two extra years? At a cost coming in close to $750K. Mostly paid by medicare and supplemental insurance.

    What killed our grandparents can be sometimes "cured" and often mitigated. At some pretty high costs that only the very well insured or wealthy can afford.

    All I'm saying, really, is that it's not "end of life", it's old age issues that start years in advance of the last few weeks/couple of months.

    Hospice is the next best thing to assisted suicide.

  • Aurora: Trump's little tantrum cost the U.S. $250 million in missiles. Plus the uncountable costs of blowback.

    We spend millions per plane on fighters that don't work.

    There are always enough resources. Until the whole system finally crumbles.

  • It is overly broad to say that high end-of-life care is a myth. This paper compares end-of-life expenditures against a huge population and also assumes that a single high cost event results in return to baseline health/function, which it often does not in the chronically ill population. The data showing high cost at the end of life from medicare is important because most elderly patients are on medicare (96%). If anything, the data shows what we know: we spend a lot more for the end stages of a chronic disease instead of prioritizing our health dollars towards prevention and intervention at the early stages of disease.

    The "straw man" of the dying patient requiring expensive, and often futile, medical treatments until the very end is not a straw man at all if you work in the hospital. It is reality. The reason many medical professionals don't question the "myth" is because we encounter it on a daily basis, especially if you work in an ED and an ICU. The reasons for it are multi-factorial, and the discussions of those reasons go beyond a comment on a blog post, but it is irresponsible to paint physicians and public health peoples as devotees of a myth.

    It is rare to find patients, and most importantly, families, who understand the medical reality of their loved one's chronic disease. I don't know the details of the decisions that Barbara Bush and her family have made, but I can tell you this: COPD is a terrible disease and most people don't understand it unless they've had first-hand experience. At some point, there are no treatments left. Only breathing treatments to help with the symptoms, antibiotics here and there for various flare-ups, and in the end, death on a ventilator in an ICU decided by family who realizes that there is nothing left to do. After that decision, you are taken off the vent, often not conscious due to the medications that are required to keep someone comfortably on a ventilator, before you are given medications meant to keep you comfortable instead of waking up in a panic. This means your final conscious moments on this earth are spent in suffocated panic during a medical resuscitation.

    I know what I would choose for myself. I wouldn't want to spend my final moments in a hospital, if I could help it. I don't want my family left with making the difficult decision of ending my medical care because culturally, we rarely discuss end of life care. I don't want to spend a week or two in the ICU for care that will ultimately do little to change the outcome. I'd rather be in peace, at home, with my family, comfortable before I drift off and let my life pass from my body.

  • This issue is muddied by the fact that long-term nursing care, which is often confused, lumped in, or deliberately conflated with end-of-life care, does account for a hefty chunk of Medicare & Medicaid spending.

    I wish I had a quick online citation for this; my usual source is my dad, a retired oncologist, hospice director, and lifelong advocate for better end-of-life care, although he usually talks about this stuff to support a different point – that much more Medicaid money flows to the middle & upper middle class than people think.

  • Two things:

    1. Any narrative that emphasizes utilization over price re: costs of US healthcare has it wrong, in the broadstrokes. It's choice of procedure i.e. why do a $1000 surgery when there's a perfectly good $10,000 outpatient physician-administered drug regime that will be reimbursed that much better? It's the power of consolidated hospital systems with huge bargaining and lobbying power, and so on.

    2. There's a measurement error in the end-of-life-care discussion, specifically the claim that the majority of spending tends to come in a patient's last year of life. Obviously though, that's only observable ex post. There may well have been a totally normal medical need for a procedure but given a patient's age, comorbidities etc the result / complications prove fatal or are ineffective. Basically, hindsight is 20/20.

  • Medicare and Medicaid are essentially insurance programs (and treated as such by doctors—I know, I used to work for one) that not ever healthcare establishment has to take. We’ve been paying these premiums our entire working lives for the express purpose of probably having to use them some day because all people get sick and die. This is the way literally every type of insurance works, in the form of a “pool”.

    The only time we gripe about other people using insurance that we all pay for is when we think that these other people are unworthy of care or dignity or life. We think that they (or their families) are making decisions that we don’t think we would make, and that they (or their families) shouldn’t be allowed to make those decisions about their own care because we know better than they do. It is somehow an offense against society, that people who are disabled or old or dying should be allowed to live, just like the healthy and young.

    You didn’t earn being healthy and young. You don’t deserve it more than anyone else. And, in all likelihood, they paid into the system, just like you. It WILL happen to you, in fact. Life isn’t fair and people die. This is 100% about what we value and who we value. We’ll find the money if we think the cause is worthy. We have plenty of scratch for war, but as soon as we’re talking about the “undesirables” getting a chance to live with dignity, suddenly we can’t manage to scrape together the cash. Funny how that works, huh?

  • The very fact there is an argument about healthcare costs is one reason the rest of the world tunes into the shitshow.

  • Bitter Scribe says:

    Let me get this straight…first Obamacare was going to lead to death panels that pulled the plug on grandma because keeping her alive was too expensive, and now it's going to bankrupt the country with health care for dying people?

    Gee, it's almost as though Obamacare opponents are a bunch of braying jackasses who don't care about being ideologically consistent or coherent.

  • "There are always enough resources. Until the whole system finally crumbles."

    Yep. The resources all go to the resourced (fuck the unresourced, y'know) until the unresourced become resourceful–then there will be blood.

    @ Aurora: Yes. 10 x.

    @ Sarah:

    That panic thing sounds like something that happens to me from time to time where I dream that I can't breathe…fortunately, it's a rare thing. I will NOT be buried, if it's the last thing I ever do!

    It's been looked at and sleep apnea isn't the problem.

    I was looking to see who, besides Sarah deserved a PUV* and gosh darn it, everybody here does.

    I must say, I rarely get to a thread with this many comments that hasn't been sullied by trollz

    * Phantom Up Vote

  • PhoenixRising says:

    @Sarah "It is rare to find patients, and most importantly, families, who understand the medical reality of their loved one's chronic disease."

    True. And also true that families have to be ready to assertively refuse more care, even when it's clear that no result other than prolonging 'days of life' can be the end.

    Last month, my mom's cancer took an extremely rare course, resulting in a seizure while she was being evaluated for a potentially treatable set of apparently unrelated symptoms. My sister, an FNP with 15 years of experience who started off nursing in this very same world famous hospital, had to physically block the crash cart. She was bullied mercilessly by nurses and doctors who knew she had been on the phone with me (I was home in a distant state) when the seizure occurred.

    They were very worried that when the other adult children arrived, we were going to sue them, because our mom insisted on walking into the hospital on her own two feet, had been to Pilates 48 hours earlier and appeared well *to them* when the seizure took us all by surprise.

    What they didn't know, and my sister didn't know, was that the connection stayed open and I had to listen to them steal her attention during the last 10 minutes of our mother's life. I have never been so outraged by our 'health care system'. My mother spent time and money after her diagnosis putting a plan in place, including a MOLST (if you don't have one, get one, may be a POLST in your state). The answers to 'what would the patient want if she could direct her care right now' were all written, in a notarized document her treating physician (palliative care) also signed. And yet, because of their fear of a malpractice suit, well-intentioned providers who dedicate their lives to saving sick and injured people had to be stopped from putting a patient into ICU on a vent…when she was clearly dying.

    Barbara Bush, like my mom, is old, white and educated. But proper end-of-life planning should be for everyone who will die (rate still at 100% despite our best efforts) and not just the privileged who raised a doctor, a lawyer and a software developer who works in cancer care applications. It would save all of us a boatload of money, and more importantly would mean fewer of us dying in the worst ways you can't even imagine if you don't work in the system.

  • @Brian M: while I've no doubt the lobbyists and high-ranking officers in the Stderr blogpost get fantastic medical care, the Lockheed-Martin engineers really don't. I worked for LM for a time, and one of the continuing battles I had was having to justify over and over and over an over and over and over again why my 7- and 10-year-old kids were deserving of being on my health insurance as my dependents. LM's HR was absolutely positive both kids were somehow gainfully employed somewhere and should therefore no longer qualify as dependents. We also had a $4k deductible each year before the insurance even kicked in.

  • the lobbyists, executives, etc. are, sadly speaking, all that really matter, Katydid.

    I am shocked, though, that your health care insurance plan was so mediocre. :(

  • I vol for an Arizona (Grey Valley) hospice organization. Medicare will let a patient go "on service" if the projected trajectory of their illness will cause death within 6 months. No one whats to admit it that far out. Medicare covers this and the benefits are awesome. Free hospital bed in home, oxogen, social worker, nurse and doctor visits in home.

    The average length of time for patients is 29 days before heaven. Hard to look at death and say "I'm going in 1/2 a year. . . You may still feel well and have some quality time. . . With a month left, you know, the family knows and you are thrilled to sign the papers. Sad.

  • @deggjr Apart from the eugenicist implications noted above, it's also a fact that the composition of that most expensive 5% is not fixed and invariant. A non-trivial proportion of this year's 5% will not be in next year's 5%. And you might be surprised to learn that the average expenditure of those in the top 5% was about $47,000 as of 2017. A large number, to be sure…but let's look at some context. This is an anecdote, to be sure, from a two-time member of the 5%:

    In 2013, I was diagnosed with non-Hodgkin's lymphoma. Although it was Stage I, diagnosis, staging, and treatment easily exceeded that $47k mark – all told, the year post-diagnosis probably cracked $100k in billing (I'm not sure what the total amount was, as it was spread across two calendar years). Now, there are never any guarantees of outcome, but this small example should show that cutting back spending on the top 5% doesn't just mean no longer spending on futile care – it also means letting people with potentially curable illnesses die, just because treating them would be expensive. In my example, there would have been no way to "cut back" other than simply saying no, we're not treating you, full stop: we know what works, and doing less than that would be (slightly less) expensive and cruel.

    Oh, and did I mention that I was 38 when this happened? It's not just 80 year olds who would be impacted. (And in case you're wondering, I didn't do anything to bring this on myself – I exercised and ate decently well – not that there are even any identifiable lifestyle risk factors for the type of NHL I had anyway.) The following year, I was out of the top 5%. Admittedly, among the top 5% in a given year, most of those who don't die will still be top 5% the following year, but like I said – it's a non-negligible fraction who are in and out. And of course, the mere fact that someone spends years requiring expensive medical care doesn't mean they don't deserve to live.

    Finally, you say that the obvious way to reduce spending is to just stop spending so much on the most expensive people…but I have another, much less cruel way. How about we finally address why everything in medical care costs so damn much? Granted, your way is a lot more likely to happen, both because there are a lot of really mean politicians and voters and because true cost control would be an enormous political lift.

  • Wonderful, insightful, thought provoking commentary which is , of course, either dismissed or simply not countenanced by murderous fucks like Paul Ryan.

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  • Hmmm…Ok, let's go with that idea that we limit the coverage for that "greedy" 5%…Now let's assume that 2 % have chronic or semi-chronic conditions that keep them in that 5% range for more than a year. That means 3% cycle in and out of the top that category each year. That means that roughly the entire population would be one of that health-care hogging population over a 33 year period. In other words – ALL OF US WILL EVENTUALLY BE THERE.

    Isn't that what INSURANCE is all about? The healthy take care of the sick until they become sick and need to be taken care of. For God's sake, that's the entire point of it.

    There are 3 outcomes for people taking who are in need of heavy-duty health care.
    1. They die – it happens to all of us eventually.
    2. They have a chronic condition and become one of the unlucky ones who actually do take more from the system than they put in over the years. (Btw, you don't want to win the health insurance lottery)
    3. They recover and continue to opt into the system.

    The purpose of treating people who have outcome #1 is in the hope that they will have either outcome #2 or #3. The purpose of treating people with outcome #2 is that this is what a compassionate and decent socity does. And NO ONE should be arguing about treating people who had #3 as an outcome.

  • At Gomez Lila:

    Fuck off bot.

    @ RG Hicks:

    Howzabout…

    If we had national health care we would see a vast improvement (if it was coupled with genuine sex education and some other verboten by screeching assholes measures) in the health of people who are poor and sick but not sick enough to die fast.

    If we had national health care we would be able to incorporate all sorts of data that we don't even gather at the moment (GSW "accidents" in a lot of states–mostly those of the southrun persuasion–for one) that would enable us to have information that might help to make better policy on a lot of issues.

    Set up insurance/co-pays for people that like to engage in stupid, risky behaviours like smoking tobacco and other things that are very, very bad not good for us.

    I'm sure that there are other things that might be brought up.

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