vivere est cogitare

Category: πολιτικά

concerning the dead

This week we learned of some notable deaths, most prominently that of Steve Jobs. He was 56. He had a relatively public fight with pancreatic cancer. Jobs co-founded Apple, and was widely credited with the meteoric rise of his company’s fortunes in the last decade. His death has prompted a rather effusive outpouring of eulogies from almost everybody.

Moments after I saw the first Facebook status updates about Jobs’ passing, I happened to wander into my parents’ kitchen to clean some dishes. KUOW, a local public radio station, was on in the background. I heard the closing minutes of a moving story about the life of the Reverend Fred L. Shuttlesworth. This was followed by an announcement of the news about Jobs. I made a mental note to look up Shuttlesworth when I got back to my computer.

As it turned out, the Reverend Fred L. Shuttlesworth had also died on Wednesday. One could (and many people did, without question) make it through the day without the vaguest notion of who this Shuttlesworth character might have been. I am quite confident that, were it not for the timing of my trip to the kitchen, I would probably never have known who he was, what he did, or when he died. But that would have been a pity, because he was by all accounts a pivotal figure in the American civil rights movement of the 1960s. He led the demonstrations in Birmingham in 1963 that generated the horrifying images of Theophilus Eugene “Bull” Connor and his officers unleashing fire hoses and police dogs against peaceful protesters. To read Connor’s opinion of Shuttlesworth is to recognize at once the latter’s tenacity and the former’s moral depravity:

Mr. Shuttlesworth suffered chest injuries when the pummeling spray of fire hoses was turned on him. “I’m sorry I missed it,” Mr. Connor said when told of the injuries, The New York Times reported in 1963. “I wish they’d carried him away in a hearse.” [1]

It is fitting to remember Steve Jobs. He and his company had a profound influence upon our lives, particularly with respect to the technology that is now so pervasive. He was a visionary of uncommon clarity, and sold his vision to us with unrivaled effectiveness, and became fabulously wealthy as a result. His legacy will be vast.

But its value is more equivocal. While the role of Apple in advancing the ubiquity of very portable electronics is indisputably pivotal, the balance of benefit and detriment to our society and the world is extremely difficult to gauge or even evaluate.

In contrast to Jobs’ morally ambiguous legacy, there can be little doubt Shuttlesworth contributed materially to the advancement of social justice in the United States of America. He was outspoken, iconoclastic, and through his actions revealed his opponents as morally bereft. What sort of a person would rather live in 1960s Birmingham than a world without Apple computers? (Please don’t say a white person.)

I understand that, as it concerns an indescribably more public and dramatically more contemporary figure (Shuttlesworth’s major body of work was nearly 50 years ago; Apple announced a new iPhone, a product and market for which Jobs is largely responsible, the day before he died), Jobs’ death was always going to draw more attention than that of an 89-year-old civil rights leader. We have been affected more visibly and proximally by modern technologies than the (relative) absence of discriminatory laws and racial violence that Shuttlesworth fought. But I think it becomes us to remember not only the famous and influential, but the just and brave.

There are some who point to our men and women in uniform, and they declare that freedom is not free. It is fought for with blood, toil, tears, and sweat. Both of those sentiments are true, but to suggest that our armed forces are the only ones who make grave sacrifices in the name of freedom (if indeed they do that at all, particularly in modern times) is terribly misleading. It is only thanks to those like Shuttlesworth that there is freedom and justice for our fine armed forces to defend.

I do not mean to diminish Jobs’ legacy. I think his impact on technology and by extension, our lives has been undeniable. And certainly, the technological landscape he helped to shape has played a role in political movements around the world. But I don’t think it is fair to attribute to him such distal effects, especially when there is no evidence of intent on his part. He was not in Tahrir Square. He was not gunned down by Syrian troops in Homs.

He changed the world, but so have many others, at much greater cost and to much less fanfare. So while we remember the significance of a figure like Steve Jobs, let us not lose perspective. We call ourselves the “land of the free and the home of the brave,” not the land of the wealthy and the home of the iPhone. Though perhaps we should change it to be more accurate?

[1] Nordheimer, Jon. “Rev. Fred L. Shuttlesworth, 89, Dies; Fought on Front Lines for Civil Rights.” New York Times, October 6, 2011. Accessed October 6, 2011.


pall of ignorance

Photo by Flickr user squishband/Richard White

[Edited 2011 March 29 to reflect the printed title of Gawande’s New Yorker article, as opposed to the Web page title]

A fascinating new study of palliative care conducted by Jennifer S. Temel et al. [1] was published today in the New England Journal of Medicine. It examines the effect on quality-of-life and end-of-life care of initiating palliative care (along with standard oncologic therapy) within eight weeks of diagnosis of metastatic non-small-cell lung cancer.

Remarkably, early palliative care was associated with statistically significant improvements in measures of quality-of-life1, mood2, and length of survival. Patients randomly assigned to early palliative care were less likely to receive aggressive end-of-life care3 and more likely to have documented resuscitation preferences (which is a major element of an advance directive). The study was conducted at Massachusetts General Hospital.

I first read about this study in an article in the New York Times, which also led me to a recent New Yorker piece by Atul Gawande, “Letting Go.” I once bought Gawande’s Better on something of an impulse (which is strange for me), and I enjoyed it, though I didn’t find it as profound as The House of God, which I happened to be reading at the time. Admittedly, it is not an entirely fair comparison.

In any case, I think Gawande’s latest New Yorker article is very effective at conveying a very important idea — that the modern institution of medicine struggles with the concept of death, and that patients suffer needlessly as a consequence. At least, that was what I got out of it. It is quite long. I suggest you read it for yourself.

Of the many responses to the piece, at once the most and least interesting was by Avik Roy, on the National Review Online. The author’s position is so willfully ignorant that one can only sit and marvel at the ferocity of cognitive dissonance necessary to sustain it.

Roy argues that Gawande “falls flat” in “[trying] to extrapolate public-policy recommendations from” the stories in his pieces, and points specifically to Gawande’s reference to the (demonstrably false) “death panel” accusation raised during the recent effort to pass health care reform legislation. In defense of “the understandable fear that Americans have that, in a state-run system, [end-of-life care] decisions won’t be theirs,” Roy writes:

“[i]n Britain’s National Health Service, for example, terminally ill patients are incorrectly classified as “close to death” so as to allow the withdrawal of expensive life support” (emphasis mine). (Roy)

As evidence, he offers (a link to another NRO article containing a link to) a Daily Telegraph report on the Liverpool Care Pathway (LCP), a report ostensibly written in response to a letter from a number of UK physicians concerned about the implementation of the LCP throughout the National Health Service (NHS).

To begin, there are a few key points to take away from the discussion regarding the LCP. The first is that neither the Daily Telegraph article nor the concerned UK physicians ever so much as suggested that the LCP facilitated the deliberate, premeditated withdrawal of care for budgetary reasons. Yet this is clearly the conclusion at which Roy intends his readers to arrive, given the wording of his accusation: “[action] so as to [outcome]” can only reasonably be construed to suggest that the action was taken with the outcome in mind, and the use of “expensive life support” gestures conspicuously toward financial considerations (and not at all toward the idea that perhaps such interventions are medically ineffective and cause suffering). In contrast, the concerns voiced by the physicians are essentially intrinsic to any discussion of death, because they are about the act of deciding whether someone is inevitably going to die. Such a decision is necessarily challenging and never as clear-cut as we would like, but more importantly, it is governed by the laws of nature, our understanding thereof, our ability to observe the human body, and how we define concepts such as life and death. It is not subject to legislation, except to a slight degree in the last criterion (though in any case, Roy is not discussion legislation governing the concepts of life and death, because no such legislation has recently seen serious discussion). The LCP was also recently revised, addressing some of the substantive criticisms directed at it, and the British Medical Journal featured an excellent (and refreshingly, fact-based) editorial on the LCP and the media frenzy surrounding it. I think I have established, then, that Roy’s reference to supposed efforts by the NHS to kill people to save money is not related to Gawande’s article, and indeed not even true.

Though he fails to establish any substance to the accusation of “death panels” even in the thoroughly socialistic NHS, Roy forges on with this gem:

But to Gawande, it’s not enough that other hospitals adopt [early discussions about end of life care] on their own. A provision in Obamacare was to provide government funding for doctors to have end-of-life discussions with their patients; to Gawande’s dismay, “it was deemed funding for ‘death panels’ and stripped out of the legislation.” The obvious question doesn’t seem to occur to him: Why do we need a government program to pay doctors to have thoughtful conversations about their patients’ eschatological desires — something they should be doing already, and that doesn’t cost a dime? (Roy)

I have a truly outlandish proposal for answering Roy’s question: RTFA. Usually reserved for seriously addle-brained posts in comment threads, the obviousness of this particular RTFA would make William F. Buckley turn over in his grave. In fact, I will spare Mr. Roy the (surely monumental) effort and post the contextualized excerpt right here:

Given how prolonged some of these conversations have to be, many people argue that the key problem has been the financial incentives: we pay doctors to give chemotherapy and to do surgery, but not to take the time required to sort out when doing so is unwise. This certainly is a factor. (The new health-reform act was to have added Medicare coverage for these conversations, until it was deemed funding for “death panels” and stripped out of the legislation.) But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is—what, in other words, we should and should not be paying for doctors to do. (Gawande)

First of all, the notion that “to Gawande, it’s not enough…” is an utter fabrication. Gawande mentions the “death panel” idiocy to explain the continued lack of compensation for such discussions, and moreover, he does not ever state that federal legislation is the preferred (or even a practical) solution. Secondly, the idea that a physician’s time “doesn’t cost a dime” is complete nonsense. It is so obviously wrong that I don’t even know how respond to it; how can someone’s time be free? Especially a physician’s time? Gawande’s whole point is that the structure of financial incentives does not encourage physicians to take the (considerable) time necessary to really find out what someone wants. I thought free-marketers were familiar with this concept.

As if to compound his failure to read with failure to comprehend what little he apparently did read, Roy concludes vapidly:

There are legislative reforms that can help address these problems. But they involve reducing, not expanding, government control of the health-care system. They involve letting patients decide for themselves, with the aid of their doctors and their families, how best to negotiate their last days on earth. If a free country can’t be about that, it can’t be about much. (Roy)

Okay. Back to Gawande’s article, which clearly establishes the importance of discussing end of life care well before the moment arrives. Theoretical autonomy is nice to talk about, but real, substantive autonomy only exists if one’s wishes are carried out. As Gawande elegantly puts it:

All-out treatment, we tell the terminally ill, is a train you can get off at any time—just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and to escape a warehoused oblivion that few really want. (Gawande)

There is no such thing as “letting” someone make a decision that they cannot make independently. Perhaps more to the point, there is no sense in supposing that, as a population, patients and their families are capable of making and conveying these choices proactively, though it is not for lack of desire. Instead, as Gawande argues (but somehow Roy could not or would not acknowledge), it is necessary for physicians and health care practitioners in general to engage them in the process, and moreover that systemic changes are likely needed for such behavior to become the norm (for the reasons outlined in the article itself). It is rather astounding how little evidence Roy offers that he has understood or even read “Letting Go.”

And recall the findings reported by Temel et al., that palliative care is in a sense self-reinforcing; those patients placed in early palliative care were more likely to utilize it than those who were not. Are we to suppose that patients in the control group wanted to suffer horribly before they died? Or can we conclude, far more sensibly, that the presence of palliative support structures increased substantive patient autonomy by enabling them to realize their wishes? And finally, can Roy offer any evidence that less government control actually leads to greater patient autonomy? Consider two alternatives: legislation requiring the acknowledgement and enforcement of advance directives, versus the lack of such legislation. Someone will always control the health care system, and you are fooling yourself if you think it could ever be the patients and their families. At best, we can hope to find ourselves well and faithfully represented by those in charge, which is not coincidentally the same philosophy behind our system of government (though whether it lives up to this is a different question altogether).

Serious discussions about medical ethics, the structure of our system of medical care, etc. such as Gawande’s wonderful work are essential to improving life (and death) in the United States. They are discussions we must have, sooner better than later, and whether we want to or not. But the sort of fact-free drivel found in Avik Roy’s response contributes nothing to the endeavor. It would be great if conservative commentators such as Roy rested their arguments on factually sounder foundations, but of course, reality has a well-known liberal bias.

Additional reading

Atul Gawande, “Letting Go.”
Avik Roy, “Letting Go of Death Panels.”


[1] Temel JS et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2010 Aug 19;363(8):733–42.

1Quality-of-life was measured by the Functional Assessment of Cancer Therapy–Lung (FACT-L) scale, the lung-cancer subscale (LCS) of the FACT-L, and a Trial Outcome Index (TOI), the latter being a sum of the LCS and the physical and functional well-being FACT-L subscales.
2Mood was measured by the Hospital Anxiety and Depression Scale (HADS) and the Patient Health Questionnaire 9 (PHQ-9).
3Aggressive end-of-life care was defined as “chemotherapy within 14 days before death, no hospice care, or admission to hospice 3 days or less before death.”