Monday, November 15, 2010

End of Life Care and "Death Panels"

I just read yet another fantastic Atul Gawande article in the New Yorker ("Letting Go" from the August 2, 2010 issue — yes, I'm a little behind). Gawande is a surgeon at Brigham and Women's Hospital and the Dana Farber Cancer Institute, a professor at Harvard, a winner of a MacArthur "genius" award, and the author of three books and numerous articles. The man is obviously an over-achiever!

He's also one of the best voices anywhere on health care and medicine, particularly on complicated and controversial issues involving costs vs. outcomes, mixed incentives, service models, and other topics about which it's almost impossible to have a rational discussion.

"Letting Go" is his latest addition to this body of work — and it's an exceptionally nuanced and thoughtful take on a highly emotionally charged issue: end-of-life care. It's a topic that's drawn increasing attention, partly because the rapid increase in the costs of care for the terminally ill, and partly because of the rise of "death panels" as a political issue during the fight over the health care bill.

The cost picture is straightforward: "Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit."

Put in actual human terms, the issues are far more complicated:

"When there is no way of knowing exactly how long our skeins will run ... our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can't eat: there's always something. We want these choices. We don't want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn't mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something."
As with most health care issues, there is no quick and easy fix. However, by contrasting the situations of people in the traditional "do everything" medical care approach vs. those who pursue hospice care (which emphasizes quality of life at the end), Gawande does draw a sort of conclusion: people need to make the choices themselves, and the best way for that to happen is conversations between patients and health care providers (earlier, rather than later) about their desires for end-of-life care. There is no incentive for doctors to hold these conversations, whereas there's every incentive to continue to offer more and more intervention. 

When the conversations are held, the results are striking. In 1991, one Wisconsin city started a systematic campaign to encourage patients and doctors to hold end-of-life discussions. By 1996, 85% of people had written directions for end-of-life care. But it was the discussion and not necessarily the directions that did the most good, according to local physicians. These days, elderly residents of this city have strikingly lower costs at the end of their lives, and spend half as much time in hospital as the national average. At the same time (and in spite of having average rates of smoking and obesity), they live approximately one year longer.
 
Here, unfortunately, is where those politicians and interest groups who managed to create the perception of "death panels" have done a disservice to millions of Americans. The so-called "death panels" were nothing more than an extension of Medicare coverage for those conversations to take place. Faced with this fear-mongering, the Democrats caved and pulled this provision, leaving people to struggle through heart-rending decisions with little or no support.

2 comments:

  1. Brilliant indeed...and also, common sense. But, where there is money to be made, common sense is suppressed to the point of intentionally stultifying or casting fear onto the general public.

    PT Barnum once said there was a sucker born every minute; today medical marketing creates a sucker every second. When the $2.3 trillion US medical industry spends upwards of 20% of its revenues on marketing, you can well the mechanism for our addiction to medical care.

    Notice the term "medical care." The US has a "medical care" system, not a "health care" system. It does not exist to take care of patients, but rather principally to derive money from them. Ask any health care administrator. Most health care providers may of course feel quite different and are simply squeezed into compliance by a system far larger than they.

    With 15% of Americans still uninsured, and another 35% underinsured or too fearful even to ask about exclusions in their "coverage," as many as 100,000 Americans die each year from lack of medical care.

    The US life expectancy ranks 50th highest in the world, for many proof alone that end-of-life care does NOT extend life, and may in fact shorten it. Which will kill you first, the chemo or the cancer? Who decides? Today it is your doctor, and the pharmaceutical industry...or do I have those in the wrong order?

    Atul Gawande is not alone in decrying this calamity which is destroying both the US economy and the American quality of life.

    It is time we all started caring, and simply making a clear end-of-life declaration or health care directive along with our loved ones. By doing so, we might save health care for those who need it and can benefit from it most: our children.

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