What I Did on My Summer Vacation – Part 1

By John Conway | September 5, 2009 11:00 am

For most academics, summer is the time to devote full time to research and, perhaps, a vacation. Not for me, this year…I have been in the front lines of health care, and so the national focus on the health care insurance reform issue has been particularly poignant. Here is my report.

The health problem at the core is not my own, it’s my father’s. For some time, more than a year, he had had increasing trouble walking. I was convinced it was degeneration of his knees; at 77, after a physically demanding career as a locomotive mechanic in Chicago, that seemed to be the best explanation for his increasing difficulty.

In February we visited him in his house in Chicago and, unlike the previous visit in January, he came out to eat lunch. We had tremendous difficulty getting him down the stairs, to the car, into the restaurant, and back into his house. He took one stair at a time, very slowly, and we carried him up the last one. Clearly it would not be much more time until something had to happen. He had spent most of the winter inside; kind neighbors helped by buying him food at the store.

About a week later I got a call from him, on the cordless phone I had installed for him in the fall. He was on his way to the hospital, having fallen in the house. He had been unable to get up for hours, and finally the paramedics got the front door open and got him out of there. Being nearly 2000 miles away in California, with no family there in Chicago to help him, I was quite worried. He checked into the ER of a hospital near his house, and was admitted.

Over the next few weeks my dad received a full suite of tests to determine the underlying cause of his inability to walk, and got some physical therapy. The eventual diagnosis was scary: ALS, amyotrophic lateral sclerosis, or Lou Gehrig’s disease. ALS is the degeneartion of the voluntary motor neuron system. Any muscle that you can voluntarily control is affected. There is no known cause for ALS, and no known cure. The time from diagnosis to death, which is usually due to inability to breathe, is typically 3-5 years. There is no test for ALS; all you can do is rule out other conditions and it wasn’t joint degeneration, spinal cord damage, a toxin, brain tumor, or any of the numerous other things they checked. He was discharged to a skilled nursing facility for rehabilitation and physical therapy.

After several weeks, he decided to try to return home and live there, getting help from the neighbors. But it was short-lived; he fell again and decided to go back to the hospital. This time I urged him to go to a large university teaching hospital, which he did.

There they did a full suite of tests and concluded that indeed he most likely had ALS. He was discharged to a rehab institution and then back to the nursing home where he had been before attempting to return home. Through all of this he remained positive and upbeat, determined to defeat the ALS, and get back on his feet. His physical therapy, though, did not progress, and the nursing home threatened to discharge him.

But then, while in the nursing home, now mid June, he began to feel very ill, had flu-like symptoms, could not hold his head up or his eyes open, had trouble swallowing and talking, and controlling his hands. Terrified that the ALS was progressing rapidly, we got him back to the university hospital. There they tried to determine whether he had “bulbar ALS” (meaning that ALS was affecting the muscles controlled by the medulla: head/neck/throat/mouth) or something else. I flew out to Chicago, and found a totally changed man, head hanging and eyes drooping, laboring to breathe. It was very, very scary.

It was something else, in fact: myasthenia gravis (MG). This autoimmune disease attacks the motor neuron/muscle interface in the bulbar region. There is a test for it: a very specific antibody in the bloodstream causes it. There is no real cure, but there is a drug therapy, intravenous immunoglobulin (IVIG) which somehow neutralizes the MG antibody. IVIG is tremendously expensive, as the drug is carefully extracted from thousands of donated human blood samples. Meanwhile, the production of the antibody can be suppressed with a less expensive drug called azathioprine, though this drug takes months to work.

My dad got IVIG therapy and was discharged to a different SNF since he did not particularly like the previous one. He rapidly improved, continued to receive IVIG every few weeks, and then we faced a problem: Medicare was about to run out.

Most of you readers not being over 65, you probably don’t really know how Medicare works. I didn’t, really, until all this happened. There are two parts: Medicare Part A and Part B. Part A covers hospitalization and other “inpatient” services, while Medicare part B covers outpatient services like doctors’ fees, prosthetics, etc. If you have been employed in the US for 10 years or more there is no premium for Medicare Part A, Part B costs $96.40 per month, with a relatively small annual deductible. (There are also Parts C and D but we won’t delve into that here.)

When I say “covers” I need to be clear. Medicare Part A has some hefty deductibles and daily hospital charges that could easily wipe someone out financially. And Medicare Part B typically covers 80% of doctors fees incurred during a hospital stay. And so, those who can afford to do so purchase supplemental Medicare insurance which covers the gaps in Part A and B. Fortunately, I had urged my dad some time ago to do this, and he did. Supplemental insurance costs about $200/month.

In the end his hospital bills were enormous, the equivalent of years of his retirement income, but completely paid by Medicare + supplemental except for a small deductible. The quality of the care he received was superb, particularly at the university hospital. His neurologist is one of the smartest, kindest, and dedicated physicians I have ever encountered, and in the face of this terrible illness showed true human compassion.

People who receive Medicare are generally very happy with it. Indeed, as we have seen this past August, a great deal of the outrage expressed at congressional town hall meetings has been to protest any possible changes or reduction of Medicare benefits. This has sent the Republicans into a logical tizzy, expressing their undying support for Medicare while at the same time railing against any sort of government run health care plan at all. Yet it is true Medicare is facing insolvency in the longer term if health care costs keep rising faster than inflation, and eating a larger and larger portion of the economy. Part of the challenge of health care reform is certainly stabilizing Medicare for the long term. With far lower administrative costs than private insurance, and no profit motive, a move away from fee-for-service and a cap on medical liability costs may be the answer.

I said that Medicare had “run out” for my dad in August. The reason is that Medicare is not long-term care insurance. After a hospitalization, Medicare plus supplemental insurance covers up to 100 days in a rehab or skilled nursing facility. After that you are on your own. If you have any money, you start paying for the level of care you need, and if you eventually run out of money, you go on public aid: Medicaid.

This is the classic scenario that people keep raising in the health care debate: should it be that if you have Medicare and supplemental insurance, then if you happen to get a disease that necessitates long term care, your life savings and (once you pass away) your home are taken from your estate? Should catastrophic illness be the huge cause of bankruptcy that it is?

Well, you can argue, there is long term care insurance. Anyone who is about 55 or over should think seriously about enrolling in LTCI. It costs $2500-4000 per year depending on your age. A skilled nursing facility costs $6000-7000 per month! My dad did not get LTCI; this would have raised his total insurance bill to about 30% of his total retirement income! It would have been the right move, though. I didn’t know about this Medicare 100-day limitation or I would have urged him to do this years ago. I assume all this was discussed in the AARP newsletters, etc. that he got as a senior for years.

And now, of course, he has a pre-existing condition, and is ineligible for long-term care insurance. He cannot return home and fend for himself – it’s simply unsafe. And assuming his ALS progresses, he will eventually lose his present ability to wheel himself around in the wheelchair, get in and out of bed, on/off the toilet, etc. because his arms will lose their strength. When this happens he’ll need full time skilled nursing.

When I tell this story to my European and Asian colleagues, they are appalled that this is how we treat senior citizens who are ill. They’ve grown up in a society where it is simply assumed that if you get seriously ill, or expect you might, you don’t need to wade through a mass of rules and regulations, limitations and deductibles and copayments to get the care you need.

Bankruptcy and state aid may be the inevitable final destination for my father, who is now in an assisted-living home very close to where I live in California. But we have one more hope, and that is due to the fact that my father served in the Air Force in the early 1950’s, during the Korean War. He was in Strategic Air Command, and helped keep our B-47s operational in Saudia Arabia and elsewhere. Last year, the VA made ALS a “presumptive service-related condition” because veterans get the disease at twice the rate of the general population. Here again, no one knows why, but it points to an environmental factor, obviously.

Having a service-related disability that requires aid and attendance triggers some pretty solid benefits from the VA, for which my dad has applied. We’ll know in the near future. I have found the VA people on the phone, in person in Chicago, and at our local county-funded veterans office to be incredibly helpful and very efficient. The VA is pretty far behind processing claims these days, but we are hopeful.

It’s hard to predict the future, and so I am focused on giving my dad some real quality of life in the time he has to enjoy it. He has taken quite a shine to his 14-month-old grandson, and seems to enjoy his new surroundings in California. He won’t have snow and ice to contend with all winter, and we’ll get him out and about when we can, including to one of the top neurologists in the world, yes, covered by Medicare. We need to start to get to the bottom of the question as to how he could have contracted two different neuromuscular diseases.

And yes, my dad has had some preliminary end-of-life counseling. ALS is a particularly gruesome way to die, and as there is no known cure, the questions about how to manage one’s care in the terminal stages are very important to address. I have found the crass politicization of end-of-life counseling by the anti-health-care-reform wingnuts to be disgusting in the extreme. Of course patients need to hear from their doctors what to expect, and of course patients need to discuss with their loved ones what they do and don’t want done if they are terminal, and of course this all should be an expense covered by health insurance! That this issue has been used to derail rational discussion on reforming health care is pure evil.

It was surprising to me that the wingnuts had not latched onto the hospice care provision in Medicare. But then, sure enough, just last night, listening to the right-wing talk radio show “The Hugh Hewitt Show” (I sometimes tune into these shows just to see how low they can stoop) there were blatant, unabashed lies being told about it, claiming that “if you don’t die within a certain time then Medicare says “too bad”. [Not so: Medicare covers an initial nine months of hospice care for terminal patients. Then, if you haven’t died yet, and you can get a doctor to certify that you are indeed terminal, you get another six months, etc.] And people listen to these lies and just believe them.

We need a return, as a nation, to an informed and rational debate about the choices facing us in reforming health care. We have a chance to do this right, but it’s obviously a very complex and emotional subject. I do hope Obama’s address to Congress on Wednesday will remind us that we are, after all, in this together as a nation, and to remain respectful and compassionate for each other.

Anyway dear readers, now you know why I have not been blogging lately…more to come about my summer in future posts.

CATEGORIZED UNDER: Health
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