Sad Story

I follow the Cosmic Variance blog and ran across the following very sad story of a scientist who discovers that his father has a terminal illness.

First, this blog entry is written by:

John Conway is a Professor of Physics at the University of California, Davis. He has been a member of a number of collaborations in experimental particle physics, most recently CDF at Fermilab and CMS at CERN. His research centers on the search for new particles that may (or may not) exist in theories beyond the Standard Model.

Here's a guy doing leading edge work and you would think he lives a "golden" life and dealing with a medical problem would be solved easily. But as you read through the personal details, you come to realize that this is a very sad story about the US health care system and how it is failing people.

His father recently came down with ALS (the famous Lou Gehrig disease). This became John Conway's rough introduction to the insanity of America's medical system. It is a complex and brutal system with lots of gotchas.

Go read the entire post. Here I'll focus on some key bits:

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.

Yep... as a Canadian I find the lack of a comprehensive system to be ghastly.

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.

John Conway found his father caught in a typical bind. The family assumed that Medicare would "look after" him. Once they realized it ran out, he now had an "existing condition" so he couldn't get medical insurance from any private insurer! A real Catch-22.

Here's Conway's view of the right wing treatment of the health care "debate" in the US:

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.]

And here is his plea for more sanity in the US:

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.

I urge you to go read the entire blog post. It is a very personal statement of anguish by someone who discovers that his 77 year old father has a terminal condition and how the system completely fails him. It is heart wrenching.

My own experience with the US medical system was last Fall when my mother died of brain cancer. She tired of the inhuman "treatments" that the hospital gave her (and the rehabilitation hospital so over-worked her that she ended up in the emergency room). So she told the family "get me out of here!", so we moved her to a hospice where they wouldn't be "treating" her so aggressively. At the hospice the staff kept intruding on our visits with her telling us that we needed to "move her out". They insisted that we find a nursing home to look after her because the hospice was reserved for "the actively dying". Well, my mother survived only six days in the hospice. She was probably among the 5% of shortest-lived hospice patients that facility ever had. But they didn't recognize that. So instead of giving the family time to be with her, they had us running all over town trying to find a facility to take her. In the meantime she passed away. We did get a little time with her, but could have had the full six days except for the inhuman system that said you had to be "actively" dying to get respite in a hospice. My head reels at a system that is so bizarre as the US "health care" system. It is a system ruled by money and everybody is trying to offload costs onto somebody else. The care for the patient gets lost in this money mad "system".