prolost

vivere est cogitare

Tag: health

pall of ignorance

Contemplative
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.”

References

[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.”

changes

This past Tuesday, Michelle and I made a day trip up to Vancouver, BC. We saw a black squirrel, ate some plants, and warmed our hands. It was fun.

I was going through some old photographs with my mom, and it’s really interesting how old age is like adolescence. Except backwards. While my cousin and I “grew up” considerably over the past few years, my grandparents have gotten noticeably older. And of course, old age can resemble childhood, in the sense that the elderly often need to be cared for in ways similar to children.

On a slightly less depressing note, this is what the Lions Gate Bridge (connecting downtown Vancouver with North & West Vancouver) looked like in 2005.

The Lion's Gate Bridge in 2005

And a beautiful song by Kate Havnevik:

se meg
som jeg er
ta det som kommer
viser meg
hvor jeg er
hvor jeg skal
og hvem du er

MKAILVVLLY

Those of you who do not live directly beneath a rock may have heard about this whole “swine flu” thing. Unfortunately, there is a considerable amount of misinformation and confusion in the public consciousness, and the media at large seems not to be helping much in the panic-mitigation department.

So before you start building your vault, a few points to keep in mind:

1. First of all, calm down.

2. There is still no compelling reason to believe that this strain, influenza A(H1N1)1, is significantly more virulent than a typical seasonal influenza.

Your run-of-the-mill flu season has a case-fatality ratio of very roughly 0.1%, or 32% of hospitalizations [1]. Let’s narrow that to the 19-to-64 demographic, which could be most susceptible to this current outbreak (an unusual pattern seen in pandemic flus and likely caused by an overly robust immune response in healthy adults [2]), and is least susceptible to the seasonal flu. Within that population, CFR is about 0.03%, or 7% of hospitalizations [1]. Past influenza pandemics have had CFRs of anywhere from 0.1% in the 1957 and 1968 outbreaks to 2.5%2 in the 1918 “Spanish flu” [3].

In contrast, the CFR in the case of influenza A(H1N1) could be anywhere from 3.1% (an upper bound, based on a maximum of 8 laboratory-confirmed influenza A(H1N1) deaths out of a minimum of 257 laboratory-confirmed influenza A(H1N1) cases worldwide, from WHO figures available at time of writing) to 0.0016% (a very conservative lower bound, based on an approximate hospitalization rate of 0.4% of all cases in the 19-64 demographic in a typical flu season [1], with which an attack rate was extrapolated from 2000 estimated hospitalizations in Mexico).

Using figures that are quite popular in the press gives a CFR of about 7.5% in Mexico (some 150 deaths in 2000 hospitalizations, the latter very dubiously assumed to be equal to the number of cases). Because of the unreliability of the “suspected” case count in Mexico, I am not convinced that this particular CFR estimate is useful at all, even as an upper bound. It’s far more likely that the actual CFR falls somewhere between 0.0016% and 3.1%.

All of these numbers don’t tell us very much (except that it is highly unlikely that this is some epic killer virus), but that’s exactly the point. Just because (thanks in large part to the surveillance infrastructure put into place in the wake of the “avian flu” panic) this (potential) pandemic has been spotted, there is no reason to assume that we have any solid evidence suggesting that the virulence of this pathogen is particularly high. However, this may very well change as time goes on and as the situation becomes clearer, and it certainly does not mean that the virus is not dangerous.

3. Virulence is not the same as pathogenicity. Perhaps more precisely, the concepts are not the same, though the terms may often become scrambled in the fray. The salient point is that while influenza A(H1N1) has proven highly pathogenic (i.e. it is highly infectious and spreads rapidly), there is not much evidence to suggest that it is especially virulent (i.e. it has not been associated with unusually high mortality or morbidity). So while governments everywhere are preparing for the possibility of a pandemic, the severity of the disease (to wit, the “causing serious illness” criterion from the linked WHO document) is far from clear at this point. And hopefully I was able to convince you in Point 2 that there is as yet no reason to suspect any greater virulence from this strain than a typical seasonal flu strain.

4. Influenza A(H1N1) has a few key differences to Severe Acute Respiratory Syndrome (SARS) and influenza A(H5N1) or “avian flu”. For one, both SARS and avian flu were much deadlier; the SARS outbreak in Hong Kong had a CFR of about 14-17% [4], while the avian flu has a CFR of something like 14-33% [3]. However, avian flu never demonstrated efficient human-to-human transmission, which made it a very deadly disease that was unlikely to spread quickly. Likewise, SARS has never been observed to be contagious before the onset of symptoms, which significantly increases the likelihood that a person at risk of transmitting SARS can be identified by basic surveillance. Influenza A(H1N1), while appearing (for now) to be far less virulent than either of these two recent serious respiratory disease outbreaks, is also considerably more likely to spread rapidly and become pandemic.

5. There is a lot of talk in the news about “suspected” and “probable” cases of influenza A(H1N1). When these words are used by a media outlet, then frankly all bets are off. On the other hand, if a news report quotes a health official referring to a case as “probable” or “suspected,” that official is (hopefully) adhering to the CDC’s Case Definitions for Infection with Swine-origin Influenza A (H1N1) Virus (S-OIV):

A confirmed case of S-OIV infection is defined as a person with an acute febrile respiratory illness with laboratory confirmed S-OIV infection at CDC by one or more of the following tests:

  1. real-time RT-PCR
  2. viral culture

A probable case of S-OIV infection is defined as a person with an acute febrile respiratory illness who is positive for influenza A, but negative for H1 and H3 by influenza RT-PCR

A suspected case of S-OIV infection is defined as a person with acute febrile respiratory illness with onset

  • within 7 days of close contact with a person who is a confirmed case of S-OIV infection, or
  • within 7 days of travel to community either within the United States or internationally where there are one or more confirmed cases of S-OIV infection, or
  • resides in a community where there are one or more confirmed cases of S-OIV infection.

You can make of that what you will. It seems to me that there is probably no logistical barrier preventing health care entities other than the CDC from confirming the influenza A(H1N1) subtype, except for one reason or another it doesn’t count as “confirmed” unless the CDC does it.

6. When I first began considering and looking into the actual severity of the whole “swine flu” panic, I thought exactly the same thing that Obama said earlier this week: this flu outbreak (and likely pandemic) is, based on the information we currently have, a cause for concern but not alarm.

If there is one good thing that has come out of what is arguably a gross overreaction by the American media, it is a heightened awareness of the importance of public health and good hygiene. So remember kids, listen to the President and wash your hands.

References

[1] Weycker, D. et al. Population-wide benefits of routine vaccination of children against influenza. Vaccine 23, 1284-1293 (2005).

[2] Kobasa, D. et al. Enhanced virulence of influenza A viruses with the haemagglutinin of the 1918 pandemic virus. Nature 431, 703-707 (2004).

[3] Li, F. C. K. et al. Finding the real case-fatality rate of H5N1 avian influenza. J Epidemiol and Community Health 62, 555-559 (2008).

[4] Jewell, N. P. et al. Non-parametric estimation of the case fatality ratio with competing risks data: an application to Severe Acute Respiratory Syndrome (SARS). Statist Med 26, 1982-1998 (2006).


1I have used the nomenclature preferred by the World Health Organization as of 30 April 2009.

2The 2.5% CFR figure for the 1918 pandemic, though almost canonical, seems highly questionable given the estimates of 20-100 million deaths at a time when the world had a population under 2 billion. In any case, data from that pandemic are likely iffy at best.

this makes no sense

A seagull nearly landed right on me today. I’ve no idea why.

what riders taught me

The other day I was reading a book on the bus, the first chapter of which features the town of Bethel, Alaska. I happened to be reading that particular part when a lady came to be seated next to me. Remarkably, it turned out that she had been a resident of said town, which has a population somewhere in the neighborhood of 5,000. We talked briefly about rural medicine and cultural encounters. They were in Seattle because her young daughter required surgery.

It was amazing.

ohgod

This is why we’re all screwed.

we call them npcs

The continued occupation of Iraq costs this nation at least $16m every hour.

Dayer AG et al. Recruiting new neurons from the subventricular zone to the rat postnatal cortex: an organotypic slice culture model. Eur J Neurosci (2008) vol. 27 pp. 1051-1060

The above is a cool article because it suggests that adult neurogenesis has the potential for clinical application. Not that it hasn’t been suggested elsewhere, but this is one of the more promising approaches.

Curtis et al. Human neuroblasts migrate to the olfactory bulb via a lateral ventricular extension. Science (2007) vol. 315 (5816) pp. 1243-9

It’s kind of surprising that it was only demonstrated in 2007 that humans have an RMS (i.e. we generate new olfactory neurons). Adult neurogenesis in both the SVZ (destined for the olfactory bulb) and the SGZ (destined for the dentate gyrus of the hippocampus), though especially the latter, has been linked in numerous studies to memory and learning.

it’s spelled ‘homicide’

Here are some interesting statistics, formatted into attractive Excel charts for ease of digestion. I chose the 15-24 age group because it encompasses typical high school and college students – those youths who are arguably in the prime of their lives. Incidentally, it is also the age group into which I fall. The chart titles are self-explanatory. I only included males of three races; this was mostly because these groups exhibit some pretty interesting trends. Perhaps more significantly, it is rather late and I am pressed for time.


All data from the Centers for Disease Control and Prevention, National Center for Injury Prevention and Control. Web-based Injury Statistics Query and Reporting System (WISQARS).