NY Times: David Brooks says “self-enclosed skin bags” who want to live are driving the country into bankruptcy

This all started simply enough.  On July 9, the New York Times published an essay by Dudley Clendinen titled The Good Short Life With A.L.S.  In the essay, Clendinen, who has previously worked as a correspondent and as an editorial writer for the paper, shared his thoughts on living with A.L.S. – which he calls “Lou,” short for Lou Gehrig’s Disease.  He also shared his anticipation of his death. 

First, here are some of his thoughts on living with the condition:

I began to slur and mumble in May 2010. When the neurologist gave me the diagnosis that November, he shook my hand with a cracked smile and released me to the chill, empty gray parking lot below.

It was twilight. He had confirmed what I had suspected through six months of tests by other specialists looking for other explanations. But suspicion and certainty are two different things. Standing there, it suddenly hit me that I was going to die. “I’m not prepared for this,” I thought. “I don’t know whether to stand here, get in the car, sit in it, or drive. To where? Why?” The pall lasted about five minutes, and then I remembered that I did have a plan. I had a dinner scheduled in Washington that night with an old friend, a scholar and author who was feeling depressed. We’d been talking about him a lot. Fair enough. Tonight, I’d up the ante. We’d talk about Lou.

The next morning, I realized I did have a way of life. For 22 years, I have been going to therapists and 12-step meetings. They helped me deal with being alcoholic and gay. They taught me how to be sober and sane. They taught me that I could be myself, but that life wasn’t just about me. They taught me how to be a father. And perhaps most important, they taught me that I can do anything, one day at a time.

Including this.

I think it was this part – and maybe a couple of other lines – that inspired one friend of mine to send me a link and have me take a look, saying that in some ways it ran counter to the Kevorkian message that reran last month in the aftermath of Kevorkian’s death.

I wasn’t so sure.  There were many other parts of this essay that troubled me and it made me kind of hope that it wouldn’t get a lot of attention.  Here’s an example of what I found troubling:

There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months’ difference. It retails for about $14,000 a year. That doesn’t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines.

No, thank you. I hate being a drag. I don’t think I’ll stick around for the back half of Lou.


I was close to my old cousin, Florence, who was terminally ill. She wanted to die, not wait. I was legally responsible for two aunts, Bessie and Carolyn, and for Mother, all of whom would have died of natural causes years earlier if not for medical technology, well-meaning systems and loving, caring hands.

I spent hundreds of days at Mother’s side, holding her hand, trying to tell her funny stories. She was being bathed and diapered and dressed and fed, and for the last several years, she looked at me, her only son, as she might have at a passing cloud.

I don’t want that experience for Whitney — nor for anyone who loves me. Lingering would be a colossal waste of love and money.

If I choose to have the tracheotomy that I will need in the next several months to avoid choking and perhaps dying of aspiration pneumonia, the respirator and the staff and support system necessary to maintain me will easily cost half a million dollars a year. Whose half a million, I don’t know.

I’d rather die. I respect the wishes of people who want to live as long as they can. But I would like the same respect for those of us who decide — rationally — not to. I’ve done my homework. I have a plan. If I get pneumonia, I’ll let it snuff me out. If not, there are those other ways.

 I think the problems start to be pretty obvious, even without the suicide plans.  Although he respects “the wishes of people who want to live as long as they can,” the consideration regarding just whose money will be used to support that life applies to anyone who isn’t fantastically wealthy.

Turns out I didn’t have to wait long for someone to pick up on the essay and its themes of “quality of life” and “expense” using Clendinen’s essay as a jumping-off point.

On July 14th, the New York Times featured an article by columnist David Brooks, titled Death and Budgets:

I hope you had the chance to read and reread Dudley Clendinen’s splendid essay, “The Good Short Life,” in The Times’s Sunday Review section. Clendinen is dying of amyotrophic lateral sclerosis, or A.L.S. If he uses all the available medical technology, it will leave him, in a few years’ time, “a conscious but motionless, mute, withered, incontinent mummy of my former self.”

Instead of choosing that long, dehumanizing, expensive course, Clendinen has decided to face death as one of life’s “most absorbing thrills and challenges.” He concludes: “When the music stops — when I can’t tie my bow tie, tell a funny story, walk my dog, talk with Whitney, kiss someone special, or tap out lines like this — I’ll know that Life is over. It’s time to be gone.”

Clendinen’s article is worth reading for the way he defines what life is. Life is not just breathing and existing as a self-enclosed skin bag. It’s doing the activities with others you were put on earth to do.

But it’s also valuable as a backdrop to the current budget mess. This fiscal crisis is about many things, but one of them is our inability to face death — our willingness to spend our nation into bankruptcy to extend life for a few more sickly months. (Emphasis added.)

You don’t have to be a health care policy analyst to see where Brooks is going with this.  In several ways, he elaborates on his theme that too many of us are insisting on living when too sick (or disabled, although he wisely stays away from that term) to do “the activities with others you were put on earth to do.”) He also doesn’t say if he agrees with Clendinen’s list – whether tying a bow tie, walking a dog, or tie a shoe – are essential to a life worth living.

It’s hard to know where to begin with an essay like the one Brooks wrote.  Fortunately, I’ve found a couple of essays that overlap with concerns that NDY (and me personally) would share.

Writing on The Business Insider, Dean Baker asks “Is David Brooks Really Clueless About the Inefficiency of the U.S. Health Care System?”:

David Brooks appears to have made a remarkable leap forward today. He told readers, “the fiscal crisis is driven largely by health care costs.”

Yes, after writing endless columns about out of control government spending and the wild liberals in the Democratic Party, someone apparently got David Brooks to look at the budget numbers. And, he saw what every budget wonk knows. While the current deficits are overwhelmingly the result of the devastation caused by the collapse of the housing bubble, the longer term shortfall is entirely the result of the projected rise in health care costs.

However, it seems that no one told Brooks that the problem is not that people in the United States are getting too much care, the problem is that we are paying too much for the care we get. The United States pays close to twice as much for its drugs, its doctors, its medical equipment as people in other wealthy countries. As a result, our per person health care costs are more than twice the average of other wealthy countries, even though they all enjoy longer life expectancies. If we paid the same amount per person for our health care as people in other wealthy countries, then we would be looking at long-term budget surpluses, not deficits.

This means that Brooks’ discussion of our willingness to die when life loses its joys is beside the point. The choices around the end of life are important and difficult, but that is not our health care cost problem. Our health care cost problem is the cesspool corruption that we rely upon for our health care.

Brooks has made a huge step forward by recognizing that the fiscal problem is not one of government spending generally, but rather spending on health care. Now he has to make another huge step forward to recognize that our health care system is a money pit that is better at transferring money to providers than giving care to the public.

In addition the World Socialist Web Site featured an essay by Kate Randall titled “The voice of the ruling class.”  Randall makes some excellent points, although NDY doesn’t think Nazi analogies – even careful ones like the brief one in this essay – are very useful.  We’d also disagree with the characterization of Obama’s health care reform efforts as “an unprecedented attack on health care for the working population…”  While NDY and many (possibly most) disability activists are less than thrilled with the final version of the health care reform bill, we tend to think it was an honest effort to expand access to health care in this country.
That’s our disclaimer – reasonable minds can disagree.
The bulk of the analysis that Randall offers dovetails very well with NDY’s views on this particular battle:
Brooks does suggest that anyone who is diagnosed with ALS should agree to end his or her life early. He is contemptuous of human feelings and ignores the social contributions that even seriously ill people can make.

The case of scientist Stephen Hawking springs to mind, a brilliant intellect who, thanks to the life-extending advances of modern medicine, has made some of his most important contributions even while severely disabled by ALS.

The case of Clendinen is cynically cited by Brooks in order to argue for the rationing of health care. “We have the illusion that in spending so much on health care costs we are radically improving the quality of our lives,” he declares. Why this is an “illusion” he does not say. It is, however, a fact that since Medicare—the government health insurance program for the elderly—was introduced in 1965, poverty among senior citizens in America has declined sharply and life expectancy has climbed.

What Brooks is really getting at—reflecting the consensus among America’s moneyed elite—is that these trends are positive evils and must be reversed.

He makes the sweeping statement that we “remain far from a cure” for cancer and “there is no cure on the horizon for heart disease.” This simply dismisses the significance of dramatic advances in the treatment of both a wide range of cancers—including lung, breast and prostate cancer—and cardiac disease.

According to the Centers for Disease Control and Prevention, the number of people who are now described as “cancer survivors” increased from 3 million in 1971 to 11.7 million in 2007—a 290 percent jump. Early detection and aggressive treatment have been credited with the dramatic improvement.

Similarly, according to studies reported in the Archives of Internal Medicine, rates of in-hospital mortality following a heart attack have dropped dramatically, due in large part to new medicines and surgical treatments. Between 1994 and 2006, the rate of this type of death fell by 53.9 percent among women under 55 and by 33.3 percent among men in the same age group.

Perhaps the most sinister part of Brooks’ column deals with the treatment of Alzheimer’s disease and its sufferers. Brooks bemoans the fact that a “large share of our health care spending is devoted to ill patients in the last phases of life. This sort of spending is growing fast.”

For the record, Brooks adds, “Obviously, we are never going to cut off Alzheimer’s patients and leave them out on a hillside. We are never coercively going to give up on the old and ailing.” These disclaimers are remarkably vague—deliberately so, one imagines.

What constitutes “coercion?” If, as many in the Brooks camp propose, insurance companies and Medicare and Medicaid end coverage for the most expensive drugs, procedures and tests, and people by the millions suddenly find they can no longer get the drugs and treatments they have depended on, is that “coercive?”

After all, they can decide to stop paying their rent or eating as much, and if they are wealthy, they can continue to receive the best medical care money can buy.

And that’s the type of rationing that conservatives embrace.  It was just a little over two months ago that we wrote about Eric Cantor’s unusual candor about his being OK with market-based rationing.  I doubt we’ve heard the end of how expensive some of us are and what a drain we are on the public welfare.  Not by a longshot.  –Stephen Drake

h/t to Gary Presley and Blane Beckwith for alerting me to one or more articles referenced/excerpted in this entry.

3 thoughts on “NY Times: David Brooks says “self-enclosed skin bags” who want to live are driving the country into bankruptcy

  1. Dean Baker and Stephen Drake — two of my absolute favorite writers on any topic — in the same post. Doesn’t get better than this!

  2. Actually, Cantor’s program is moving in the direction of competition and patient control. His program will allow medical care consumers some ability to make rational decisions about their medical care in a market where providers have to compete with each other to provide service. With Medicare Part D (drug coverage) this has lead both to reduced drug costs and lower government expenditures. It may not be a perfect plan but the current plan where some government bureacrat decides what care you will get has resulted in out of control costs. And while David Brooks calls himself a conservative, most conservatives would not call him that. The move toward consumer choice would be, I think, a good thing for disabled people who, with the right program, would be able to choose to spend their dollars on home care rather than nursing home care. The health care program passed by the Democrat congress will create hundreds of government bureaucracies which will decide what care the government will pay for and how much it will pay with no appeal and no judicial review. Is that really good for disabled people? If you want to see how it works in real life, look at England and the Liverpool pathway protocol where doctors decide when you are ready to die and administer enough drugs to keep you anesthetized and incapable of protest, while they deprive you of liquids and food , to kill you. 17 percent of deaths in England now are accompanied by the Liverpool pathway protocol. Some physicians and citizens there are very concerned that people are being killed and a few have been rescued from the government hospitals and have lived for another year or more at home. Here at home, we have already seen the FDA’s decision to disapprove the use of Avastin as a breast cancer treatment even though many oncologists think it is an effective threatment, http://www.nccn.org/about/news/ebulletin/2011-01-24/avastin.asp

    Cantor’s idea is to take the same healthcare dollars we spend now and give consumers more choice as to how those dollars will be spent. I am sure that if people could do that now there would be big savings. AS a personal and small example, I take a drug in a 240 mg dose. I have discovered that 2 120 mg capsules of the same drug cost less than half as much as the 240. I am asking my doctor if to rewrite the prescription to save money while still getting the same medical benefit. CAntor’s plan is not perfect but it is the best approach to controlling costs without impairing real quality of care. As John Mackey noted in his controversial Wall Street Journal editorial, we ask what is the price in many other vital services and we shop for value. We don’t do that with medical care because the decision has been taken out of our hands, or we think it has.

    So people should have more options to make decisions about their own care. CAntor, and I, believe that will lead to both improved care and cost savings.

    And one word about the article, you don’t have to be Stephen Hawking to merit continued medical care. Every person is a mother, daughter, father, brother, or friend who brings value to other lives even when they have to blink their eyes to communicate. My own relatives wanted to be home with their families when death approached, not in a hospital. Most disabled people I have known would rather be home than in a medical care facility. The problem is our present system does not provide the supports necessary to make that possible. There are challenges in dong that without encouraging fraud and abuse by people who are not truly disabled and by medical care and equipment providers who encourage overuse. But we need to face those challenges.

  3. To the15th – Thanks! Praise is always appreciated. 🙂

    To SDSali —

    I am sorry, but I have trouble seeing the logic of yours – or Cantor’s – position.

    I don’t see the “free market” – especially when it comes to insurance companies – doing anything to create a better system of healthcare system for people.

    Take the problem of medical errors. Just about any physician – if you catch her or him in an honest moment – will admit that there are practitioners who account for way more than their fair share of medical errors and malpractice suits, and not due to being in a high-risk specialty, such as neurosurgery. The insurance companies could have leaned on hospitals a long time ago to force either retraining or dismissal of doctors who have high error rates. As it is, when a doctor does get delicensed in one state due to incompetence, they just set up shop in another state – like Texas, with severe malpractice award limits.

    We’re dealing with absolute nonsense with our own insurance company right now. My partner has a neuromuscular condition and now needs a cough-assist device. She’ll need it the rest of her life. The insurance company only pays for a *rental* – which means that they will end up paying much more than if the machine was bought outright.

    By contrast, medicare has done something to coerce better treatment. They will no longer reimburse the cost of treatment of skin breakdowns acquired in hospitals that reach state III or IV. The reasoning is that if the patient had been properly cared for, the breakdown would never have advanced so far.

    I don’t see the government as a panacea, but I prefer it to a system that is designed to guarantee maximum profit for everyone involved – from insurance companies, to providers, to equipment and supply vendors.

    The math doesn’t add up in the “free market” system. Some of us are predictably and invevitably expensive. No one will cover us at a cost we can afford. –Stephen Drake

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