Does getting medical care really have to be this hard?

["Can't you please just fit
me in somewhere?"
18th-c. engraving]

If you're my friend (or have read my blog), you know I'm (a) grateful for American medical specialists who have taken excellent care of my heart problems and (b) frustrated by the American medical system in general. It should not be so difficult to get good medical care.

Here's my story this week.

Late Wednesday afternoon I apparently had a TIA. It lasted less than 10 minutes, but TIAs shouldn't be ignored: they can mean a stroke is waiting to happen. To be safe, I went to the ER. They tested me and advised me to see my primary care physician or cardiologist early this week for follow-up tests.

Ideally follow-up tests for TIAs are done within 48 hours, but this was the Fourth of July weekend and my risk factors are low. I decided to call for an appointment after the weekend when medical offices reopened.

Monday, however, I learned that my primary care physician is on vacation. The PCP's triage nurse faxed my cardiologist's office an order for an echocardiogram, but they couldn't do it for two weeks or so. (If they did it earlier than six days from now, they told me, I'd have to sign a waiver saying I'd pay for the whole thing myself if my insurance company wouldn't. I have no idea what Medicare thinks about echocardiograms, so I demurred.)

Actually, though, my discharge instructions say that I need more than an echo. I also need a "an outpatient stroke workup including a carotid ultrasound ... and possibly additional testing." Because I don't have a physician's order for any of that, I need to see a doctor before getting the tests done.

So I called the cardiologist's office directly and learned he too is on vacation, and besides, he doesn't have any openings until September.

Next I called the hospital whose ER I visited, and they referred me to their cardiology team. Unfortunately the lady who answered the phone interrupted me (so I'm not sure if she knew what I was looking for) and connected me to a cardiologist's voice mail box. I hung up.

Next try: a different cardiology group. They neither answered their phone (after 15 rings) nor offered voice mail.

So I called the Johns Hopkins Heart and Vascular Institute. The man who took my call thought he could get me in to see a doctor 45 minutes from my home on Wednesday or Thursday, but before I could make the appointment, the call dropped.

I called right back, and the woman who took my call said the first available opening was a week from today, which is nearly two weeks after the TIA, also 45 minutes away. ("These appointments fill up fast," she explained.") I took it.

 I'm probably fine. It's very unlikely that any further problems will develop in the next week (or however long it takes to get the tests done after I see the doctor). If they do, of course, they could be major, and they could affect the rest of my life. But I'll just have to take my chances. What else can I do?

The American health care system is excellent - if you can figure out how to work it, and if you don't mind waiting, and if you aren't scared that you might get an enormous bill after the work is done.

KNOCKING ON HEAVEN'S DOOR by Katy Butler

On an autumn day in 2007, while I was visiting from California, my mother made a request I both dreaded and longed to fulfill. She'd just poured me a cup of tea from her Japanese teapot shaped like a little pumpkin; beyond the kitchen window, two cardinals splashed in her birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. She put a hand on my arm. "Please help me get your father's pacemaker turned off," she said. I met her eyes, and my heart knocked.

That's the first paragraph of Knocking on Heaven's Door, Katy Butler's memoir about caring for her parents in their declining years. If you have ever taken care of a demented or dying loved one, or if you know somebody who has done so, you should read this book. If your paycheck comes from the healthcare sector (now 18% of the U.S. economy), or if you find that even the reduced insurance rates under Obamacare are too high for your budget, you really should read this book. Like all good memoirs, it's about so much more than one person's experience.

Jeffrey Butler, a retired Wesleyan University professor of history, had dodged death several times--as a teenager, when he arrived seconds too late to jump into a car carrying several of his friends to a fatal crash; as a young soldier in Italy during World War II, when he nearly bled to death after a German shell blew off his left arm; and again in his late 70s, when a sudden stroke left him helpless.

His wife, née Valerie de la Harpe, was also a survivor. In her forties, she discovered a walnut-sized lump in her left breast. It turned out to be malignant, and her subsequent radical mastectomy--which removed not only the breast but also much of the chest wall and four cancerous lymph nodes--revealed the possibility of further metastasis. After enduring six months of radiation treatments, she chose to have her right breast removed as well. Her cancer did not recur.

Katy, their daughter, was no stranger to loss either. For much of her life she had an on-again-off-again relationship with her challenging parents and her semi-estranged brothers. After a divorce in her 20s, she had trouble committing to a new love. And yet, like her parents, she repeatedly picked herself up and kept going, creating a career as a memoirist and investigative journalist.

But experienced as the Butlers were in suffering and loss, they were not prepared for the technologically enhanced torments of old age.

Knocking on Heaven's Door tells what can happen when a person's mind and body endure a series of shocks that would naturally lead to decline and death--except that, through various technological interventions, the body is not allowed to decline along with the mind.

In Professor Butler's case, a major stroke wiped out most of his ability to function independently and set him on the road to dementia. At the same time, his heart was slowing down. A year after his stroke, over the opposition of his primary care physician, Butler was fitted with a pacemaker. His cardiologist strongly recommended it. He needed hernia surgery, the doctor said, and his heart was not likely strong enough to survive the operation. So he had the pacemaker installed, he had the surgery, and he was rewarded with another six years of increasingly hellish existence--not only for himself, but also for his wife and his daughter. His mind was shot. His body would not do what he wanted it to do. But his artificially assisted heart kept relentlessly ticking away.

Not long after her husband finally died, Valerie Butler, then 84, learned that her own heart was giving out. She would need a double-valve surgery plus a bypass operation, her doctor told her. Without surgery, she had a 50/50 chance of dying within two years. With surgery, she could live another six. There was, however, a risk of stroke ...

Valerie Butler said no. She died within months.

She died of old age, sickness, and death [Katy writes]. She died of a heart calcified and broken by six years of nonstop caregiving. She died of being eighty-four. She was continent and lucid to her end. She took back her body from her doctors. She died the death she chose, not the death they had in mind. She reclaimed her moral authority from the broken medical system that had held her husband hostage. She died like a warrior. Her dying was painful, messy, and imperfect, but that is the uncontrollable nature of dying. She faced it head-on. My brother Jonathan called it a triumph.

This is not a book about assisted suicide or euthanasia. Do not read it to find ammunition for or against whatever you believe about those ethical issues, because that is not why Katy Butler wrote it. It is partly a very personal memoir about an already troubled family who found caregiving much, much harder than they ever expected. It is partly a love letter to the father Katy alternately fled and adored, and to the mother she admired but could not get along with. It is also a look at what the contemporary American approach to healthcare is doing to elderly people and to those who care for them.

And it is a clear-eyed recognition of a truth so many of us try to avoid: that it is our nature to die, that there is nothing we can do to escape death. Thanks to technology, we may be able to postpone it. We may be able to make the dying process take a lot longer (and be a lot more miserable). We can choose to add weeks to our lives and hundreds of thousands of dollars to our hospital bills by dying in an ICU rather than in hospice or at home. But we can't stave off the grim reaper forever.

If we refuse to accept our mortality, if we are willing to pay any price and bear any burden to make our lives longer (though not better), if we continue to pass healthcare laws that refuse to subsidize doctors for discussing end-of-life issues but that give carte blanche to businesses that value corporate profits over compassionate care--then death will continue to be not only an enemy, but an increasingly ferocious one.

A Canadian who loves her health-care system

This morning a Canadian woman wrote such an interesting comment on an old post of mine, "Rationing is not a four-letter word," that I want to share it with you. I don't know the author, her full name (though she tells me her first name is LaVonne, so she's obviously a great person), or her contact information, so I can't give her full credit. But thanks, LaVonne-in-Canada: I learned a lot from you.

Here's what she wrote about how Canadian health care works for her. I've added a few comments in red, in case you want to compare the situation of LaVonne-in-Canada with that of LaVonne-in-the-United-States.

As a Canadian, I can't understand why a medicare plan such as we have is not feasible in the USA.

As a a retired person, I pay $65/mo. When I was working, it was less - employer paid a touch more than half. [As an American retired person, this year I paid $265.85/mo--that would be $104.90 for Medicare Part B (medical insurance), $44.10 for Medicare Part D (prescription insurance), and $116.85 for Medigap Plan G (to cover Medicare's very high co-pays). When my husband was employed, my insurance cost was half that amount because his employer paid about 3/4 of the total cost--but three months ago, the employee's cost for that policy at least doubled.]

Since 2008 I have had two major operations which didn't cost me anything except $35 per day for a private room in the hospital (my choice...a 4-bed ward would have been free). [In 2011, before going on Medicare, I had a major operation which cost me $2,111.35, which seemed like a real bargain since the hospital bill was originally $172,833.97. Insurance agreed to pay $116,748.28. Earlier this year--again, before going on Medicare--I had an outpatient procedure that cost me nothing, even though the hospital bill was originally $47,914.28. Insurance agreed to pay $15,763.77. It's a strange way of doing business.]

Moreover, no charge to Canadians for doctor's office visits. We don't have to delay need for care, might save worsening condition. [Because I bought a Medigap policy (Plan G), I first pay a $147 yearly deductible, after which I am not charged for doctor's office visits. Under our former Blue Cross Blue Shield plan, I was charged $20 to see my primary care provider and $40 to see a specialist.]

We have a population of less than 35 million. Our population can support a universal healthcare plan. The USA has more than 10 times the population of Canada. Surely 350 million people can support a universal health care plan successfully - many more people to pay into it, and as well, more healthy employed people than sick people by far to support the plan, I should think.

By the way, my $65/mo covers 60% of my dental care, too, however this is an option my former employee-plan (union job) allowed me to take. If I'd wanted to pay in more, I could have opted for 80% dental coverage, or 100%. Medicare without the dental would cost $57/mo.(rather than $65). [Alas, my $265.85 includes no dental coverage. And even though I pay for prescription insurance, I also pay out-of-pocket for prescriptions: in my case another $57/mo as long as I don't need anything next year that I'm not already taking.]

Do you think that if your legislators could corrall Big Pharma and Big Insurance Co., that maybe your country could get something even better going? The current Obama-care is not the whole way your President wanted to go (he wanted something more along the lines of the Canadian plan) but he was hog tied, he had to compromise.

We are not socialists in Canada. We have a capitalist system, too. However we don't fret at the thought of socially subsidized provision for people's health, and I think as a consequence we might have a healthier population. The Native Indian people in Canada have totally free healthcare - they don't have to pay any monthly premiums at all.

Now if you happen to think that the Affordable Care Act (aka Obamacare, in spite of what Jimmy Kimmel's interviewees believed) will give us a Canadian system, please, please, please read "Obamacare vs. Canada: Five key differences." The two systems are very, very different--and the differences help to explain why I pay hundreds of dollars more a month than LaVonne-across-the-border, and get significantly less.

And if you're itching to point out that Canadians have to wait longer than Americans for health care, or that Canadians stream over the border to American hospitals, or that Canadian seniors can't get hip replacements, please, please, please read "5 Myths About Canada's Health Care System" and learn what is really happening across our northern border. It's probably not what you think. It's certainly not what the U.S. anti-health-care lobby wants you to think.

These are short articles. You have time.

The truth is, as LaVonne-in-Canada noted, the Affordable Care Act is not exactly what President Obama wanted. He had to compromise, and as a result, Obamacare is not nearly as effective as Canadian health care--though it's somewhat better than what we had before. And Canadian health-care benefits aren't as amazingly good as, say, French or Swiss benefits (which still cost considerably less than ours, by the way), though if our aim is to keep costs as low as possible while still insuring everybody, we still  might choose to imitate Canada rather than some of the more generous countries.

But until the American people come to realize that our current mishmash of a system is costing them a lot more than a more centralized system could--and until our lawmakers find the courage "to grapple in a systematic fashion with the overall inefficiencies in health care delivery and financing, the administrative burden of multiple payers, providers and plans, and the cost pressures of defensive medicine," as the "Obamacare vs. Canada" article suggests--we will keep on paying more, getting less, and regularly shutting down the U.S. government and (who knows?) maybe crashing the entire world's economy.

Medicare Part D: Another year, another huge price increase

I signed up for Medicare last month. In addition to standard Medicare, I added Part D, the prescription drug benefit. My 2013  costs, if they had covered the entire year, would have come to $529 for insurance and $330 for prescription copays.

Today's mail brought the rates for 2014. The insurance premium has increased to $650, or by about 23%. Copays have also increased, to $616, or by nearly 87%. The total increase - assuming I won't need any additional medications - comes to 47%.

I was not happy when President Bush proposed and AARP supported Medicare Part D, the prescription drug benefit. The idea of insuring seniors' drugs was good. The resulting law, which specifically forbids the federal government from negotiating prices with pharmaceutical companies, was insane.

Well, "insane" is putting a good face on it. The financiers who supported the companies who bought the politicians who voted for the law were by no means insane. They were lining their own pockets, never mind the rest of us.

It's obvious, isn't it? If the government gives away money without limits and accountability, retail prices rise, insurance premiums rise, and consumers end up paying as much (or more) out-of-pocket than before the government stepped in.

Want proof? Take a look at this chart from the Kaiser Family Foundation. Notice that the U.S. government spends about as much of its GDP on healthcare as other developed countries (without, however, insuring everybody, as the other countries do). Notice that, unlike citizens of other countries, U.S. citizens spend a whopping amount in addition to what the government spends. The difference? Those other countries put strict limits on what pharmaceutical companies and other medical suppliers can charge.

Some Americans suggest that the government should just stop subsidizing things like health care and education. That doesn't make sense unless you think that only rich people should have access to schools and hospitals. But it makes more sense than subsidizing something without putting a ceiling on what the lucky recipients can charge for their goods and services.

I am going to look for a different Medicare Part D insurance company. I don't expect to find one that's much better, however, until our lawmakers learn to say Yes to middle-class and disadvantaged people and a loud, resounding No! to rich institutions and individuals who want to get even richer at our expense.

Hip hip hooray for Belgium!

Opponents of Obamacare like to talk about how long it takes to get a hip replacement in, say, Canada (even though the Affordable Care Act is nothing like the Canadian health plan). Let's put this in perspective. How about a system that charges so much that some middle-class insured people can't afford a hip replacement at all?

Unless they fly to a Western European country with "socialized" medicine and pay out of pocket. Check out this story about Michael Shopenn, a man whose artificial hip was manufactured in Warsaw, Indiana, "a global center of joint manufacturing." Shopenn, who had health insurance, could not get coverage for a hip operation because his insurer deemed it a pre-existing condition (note: that should no longer be a problem now that we have the ACA). So he ended up flying to Belgium.

A Belgian citizen with no supplementary insurance would have paid only 25-50% of what this American paid for "not only a hip joint, made by Warsaw-based Zimmer Holdings, but also all doctors’ fees, operating room charges, crutches, medicine, a hospital room for five days, [and] a week in rehab." And the Belgian would not have had to add airfare to the rest of the cost.

But for Schopenn, the Belgian tab was a good deal--far, far less than he would have paid in the U.S., and no more than his co-pay would have been if his insurer had been willing to cover the surgery.

If you're curious about Belgian healthcare, you can read about it here.

And yes, Belgian taxes are high. But if you total up American taxes (income, Social Security, Medicare, property, sales) and add them to the cost of American health insurance (what you pay and what your employer pays), you may notice that we Americans are spending a lot of money for our services, too, whether we can afford to use them or not. Maybe even more than the Belgians.
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I put "socialized" in scare quotes because that's the word Obamacare detractors love to use, even though it's wildly inaccurate. Belgian healthcare is actually based on mutually owned insurance companies that compete for state funding based on membership. A high percentage of the hospitals are private.

More on why medical bills are killing us, including an account of my own recent experience

TIME magazine has put its brilliant long cover article, "Why Medical Bills Are Killing Us" (March 4, 2013), behind a paywall, so if you're not a subscriber the link won't help. I understand why they did this: my husband has been in the magazine business for over 30 years, and it's awfully hard to pay staff when readers want everything free.

On the other hand, I wish every American and especially every lawmaker (local, state, and federal) would read this article. It explains better than anything else I've read why our health-care system costs way more than that of any other developed country, and why Obamacare, alas, is so unlikely to bring our costs down. It also gives a few good suggestions about ways to improve our health-care system even if we're not in the mood to give it the total overhaul it so desperately needs.

I supported Obamacare. It's awfully hard to steer a parked car, and the Affordable Care Act got us rolling. But we can't stop reforming health-care now, because our system is still broken. I agree with American economist Tsung-Mei Cheng's tongue-in-cheek Universal Laws of Health Care systems (I'm quoting from T.R. Reid's excellent book, The Healing of America, which I reviewed here, here, and here):

1. No matter how good the health care in a particular country, people will complain about it.
2. No matter how much money is spent on health care, the doctors and hospitals will argue that it is not enough.
3. The last reform always failed.

America's health-care system is not getting the results it should. See the latest report from the National Research Council and Institute of Medicine, whose title sums up our situation: "Americans Have Worse Health Than People in Other High-Income Countries; Health Disadvantage Is Pervasive Across Age and Socio-Economic Groups."

The way America's health care is financed would be hilarious if it didn't hurt so many people (go to the library and read the TIME article to be appalled). A personal example: I recently had an electrophysiology study performed at a highly rated Chicago hospital. From my arrival at 6:15 a.m. to my discharge at 9:30 p.m., the care I received was excellent. I am a big fan of most doctors and practically all nurses.

And then I got the paperwork.

• What the hospital and doctor billed my insurance company: $56,737.28
• What the insurance company agreed to pay: $18,591.77
• What I am probably going to have to pay: $858.80
• What I would be billed if I were unemployed and uninsured:  $56,737.28

Of course the hospital wouldn't be able to collect the full amount if I didn't have it, and I could always negotiate with them - that is, if my English language and negotiating skills were excellent, or if I could afford to hire a negotiator, or if I even knew that negotiation was possible. Or I could declare bankruptcy.

A lot of things still need reforming in our partially reformed health-care system. Could we start by requiring health-care services to have uniform prices for all, and to post their prices so that clients can know the cost of treatment before they sign up? And then could we ask the government not to give health-care services money unless it simultaneously puts limits on how much those health-care services can charge?