American healthcare is a malignant tumor that can’t stop killing its host
If you haven’t seen yesterday’s post “A thousand points of fiscal pain”: a patient discovers healthcare’s Gordian knot — in 2009, please read it first. Back then it started the odyssey that screeched to a halt in 2017 with the post below. Note that the trend lines in those graphs continued unabated since 2009, even after ObamaCare became law.
Performance that constant means the fix is in: something in the setup is guaranteeing “No matter what you do, this trend shall continue.”
In 2017 the Patient Power blog wrote to me, asking if I’d write about “cancer’s unspoken toxin: finances.” (Did you know 42% of cancer patients exhaust their life savings within two years, and 38% are bankrupt after four years?)
People can (and do) argue about the dollar value of saving a life (cost per QALY … quality-adjusted life year), but what struck me in my travels was that at the same time we’re the most expensive, US healthcare is also less likely to get the job done than other countries. Here’s my post for Patient Power.
American Healthcare: A Malignant Tumor That Can’t Stop Killing Its Host
September 13, 2017 on the PatientPower blog
As someone whose life was saved 10 years ago by the best of healthcare, I find it bizarre that we have arrived in an era where — only in America — there’s a new medical concept called “financial toxicity.” Google it. Or read this ASCO interview on CancerNetwork.com. (Or for a deep, deep dive, far beyond oncology, try the sobering 2017 book An American Sickness.)
Many things astound me about this. One of course is that medical costs in the U.S. are way out of control (more on this in a moment), but another is that the medical profession couldn’t wrap its head around this enormous problem until it was given a medical name: “toxicity”! Yes, it’s not enough to tell them “I can’t afford this” — that doesn’t get them talking about it — for big discussions to start, we had to phrase it as “You’re killing me here!!” How sick is that?
Well, after 560 speeches and policy meetings in 17 countries over the past eight years, I’ve learned that it’s not much use to talk to scientifically trained people in terms they don’t understand; ergo, it’s useful to talk in terms they do. So I’m going to express it here in terms any oncologist will understand: after much consideration, I assert that the American health system has evolved to be precisely analogous to a tumor that can’t stop growing, even when it starts killing its host.
So what the heck are we — the people with the problem — supposed to do? In this post, I’ll give my view of the problem (as a businessman who almost died), including the industry structural issues I think are at the root of it, and propose how we, as powerful patients, can start the long process of creating change, while doing what we can to protect ourselves.
It’s not a new subject.
Patient Power has covered parts of the subject before: 2016’s Managing Financial Concerns With a Cancer Diagnosis, and this summer’s My Experience With Medical Insurance Billing and Doctor Office Visits. The Google search above has links going back years. But then, we also know it takes 17 years for new medical methods to be adopted by half of physicians.
So, if we want to be empowered and effective, we need to accept that many providers don’t get it yet. That means we need to share this concept (as kindly as possible), watch out for ourselves, and speak up.
Chin up: academic progress has begun!
It took me years, as an impatient patient evangelist, to accept that it takes a long, long time for attitudes and paradigms to shift — not just in healthcare but in any science. Nobel Prize winner Max Planck has one of my favorite science quotes of all time:
“A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”
I’ve learned that industry-wide change can take a generation or more — but you don’t have to wait, because it always starts with thought leaders who see the new reality. You can be part of that process.
Several patients had the chance in July [2017] to participate in what I now see as a major workshop at the National Academies of Science, Engineering and Medicine (NASEM) — major because a lot of credibility is attached to the reports that come out of such events. The workshop was about “survivorship” — life after the treatment ends — and my assigned session included financial aspects.
You can watch my session here and other patients’ talks here (Kim Hall-Jackson) and here (Mary Scroggins), and other talks from the two-day event in the related links. My slides are here.
What you need to understand.
Three laws explain this aspect of understanding US healthcare: the system wants to grow (like a tumor), and is good at it; yet it’s not necessarily getting the job done; so price and value are severely out of whack. Result: toxicity. A few words and a graphic make each point:
1. The system wants to grow, and is good at it.
Before we can take effective action, we need to understand what we’re dealing with. Healthcare in the U.S. is a for-profit industry (even though many are technically “not-for-profit”), so most executives have direct responsibility for protecting revenue, aka increasing (or at least preserving) health costs. These are competent people, and look at the results (left). It’s an amazingly consistent growth curve all the way back to President Bill Clinton’s administration, through the Bush years and the Obama years.
For now, this is the nature of things in the US. What we need to understand as patients is that the system wants to grow and does not want to go out of business.
Remind you of anything? Reminds me of a tumor. I’m not kidding.
2. Yet, it’s not necessarily getting the job done
In June 2017 I posted about the image at left — a fancy fire engine that, ironically, fell into a sinkhole in Miami, and thus failed to deliver the value it was designed (and purchased) to deliver.
The context of the post was a new study in Lancet, funded by the Bill & Melinda Gates Foundation, showing that the U.S. ranks poorly in “amenable mortality,” i.e., whether we succeed in delivering what we know how to do. (I get a bitter taste when I see the title of the article: “Mortality due to low-quality health systems.”)
What’s a patient to do? Again, the answer is awareness and assertiveness: do what we can to know what the best possible care is; understand that the “tumor” may not be guaranteed to get it to you; speak up, and even educate each other. (That’s precisely why I’m taking the time to write this.)
3. Bottom line: price and value are out of whack. Result: toxicity.
The result is the astounding graphic at left, from the “Our World in Data” site. (I blogged about this, too, while preparing for that NASEM workshop — thanks to journalist Dan Munro for spotlighting the graphic.)
The vertical axis is life expectancy; the horizontal is cost per citizen. For our money we get lower life expectancy (consistent with the “amenable mortality” concept) and wildly higher costs (far out to the right).
Where is the extra money going? Clearly it is not buying better life expectancy provided by better doctors and hospitals than the rest of the world.
The truth shall set ye free. But first it will piss you off.
Nobody’s sure who first said that, but ultimately there’s power in having a stronger relationship to reality.
Nowhere is that more potent than in cancer. I’ve just finished rereading the Pulitzer winning Emperor of All Maladies (the “biography” of cancer), and boy were we powerless in the centuries when we had no clue what this crab-like disease was … even until the late 20th century!
The most brutal example was radical mastectomy — utter butchering of women’s bodies by confident but arrogant doctors, whose word became orthodoxy. But until we understood the nature of cancer — it’s DNA that has run amok — no amount of butchery had any chance of solving the problem.
So it is with the “financial toxicity” of the cancerous growth of U.S. healthcare. The evidence is clear that the system is not inherently designed to serve the person with the problem, and equally clear that the good people delivering care are not always attuned to this reality.
Be empowered — for real.
The World Bank defines empowerment as “Increasing the capacity of individuals or groups to make choices and to transform those choices into desired actions and outcomes.” When you think about it, every single thing on the PatientPower site is about that: improving your capacity to choose and then be effective.
How can you increase your capacity in confronting the financial tumor, in addition to your biological ones?
My single biggest tip, combining all of this, derives from the now-well-accepted discipline of SDM (shared decision making), in which providers have accepted that the right choice of treatment cannot be made without knowing the patient’s priorities. So express yourself — go ahead and say this:
“I know there are a range of options, and the right choice depends on what’s important to us as a patient and family. We are really concerned about financial toxicity. How can we learn about costs for each option, and make it part of our decision process?”
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Eight years after that 2009 post, a million air miles, hundreds of events, dozens of books on science and history of medicine and human behavior, and I ended up right back at the start, where Tom Daschle had brought me with Critical: the system really is a Gordian knot, impossible to untangle. No matter what you try to improve, somebody’s income will get hurt. So the system resists.
But those of us in trouble must still get care, and we get it from the system, so I’ve concluded it’s essential that we take care of ourselves as much as possible. (One friend, an industry insider, warns his wife that the health system thinks of every lab test as a “revenue on-ramp”: “It’s how they welcome you into their spending parlor for more tests and treatments.”)
So how do we take care of ourselves? A key factor is to have a clear picture of our medical data, so we know our status and can tell when things are shifting — as I said in that 2009 post:
“I’m starting to think that as patients, our fastest access to better solutions is to take matters into our own hands: use the Internet to gain access to information (and to each other) and create new tools of our own.”
Today I feel that more firmly than ever. And that’s why, even back in 2009, I decided to try gathering my data using that tool called Google Health. More about that in the next post, A Cold Day in Hell, 2009: Why I said yes to Google Health.
