A Good Death?

"Heart attacks are the number one killer of middle aged men!"
"20,000 people per year die needlessly because of the lack of effective treatment for this disease."
"20% of eighty-year-olds who will die this year will die of complications from Alzheimer's."
"Pancreatic cancer accounts for only 1% of the annual cancer diagnosis rate, yet 15% of the annual cancer death rate."

Fundraising for scientific charities or research, advocacy for federal funding, and bioethical arguments concerning medical technologies or public policy goals will often quote statistics concerning the death rate for a particular condition or set of circumstances.

(I just made all those statistics up, by the way. This is not the blog to read for accurate scientific data.)

These statistics are deployed in order to convince the listener/reader of the urgency of the need for donations, funding, excellent students to enter the field, policy changes, or whatever is being sought. "20,000 people per year? Oh, that's terrible." "What? The number one cause of death? That's where our research dollars need to go!!" "Such a high proportion of deaths? We must do something about that."

Because the answer to the implied question--"How many people per year should die of this or that condition?"--must, of course, be, "None, if we could prevent it!"

30,000 children under the age of 5 die every day from starvation-related causes. (That's one statistic I didn't make up, actually.) How many children should die every day from starvation-related causes? If your answer is not a resounding "NONE!" you are an inhuman monster.

How many people per year should die of pancreatic cancer? None, if we can prevent it.
How many people per year should die of AIDS-related illnesses? None, if we can prevent it.
How many people per year should die of MRSA? of heart disease? of leukemia? of renal failure?

None. Of course.

But the argument takes a different turn when you begin to ask a different question. Of what should people die?

What should be the number one killer?

In some cultures and in some times, the answer to this question was more clear. People should die in battle, if they could arrange it. Or they should die while on the hunt, or with their families, or in service to the gods. When one acknowledges that one must die, it is not too difficult to imagine better and worse ways to die.

Francis Bacon changed the course of history when he challenged the world to "call no disease incurable." Medical sciences--indeed, all the sciences--were given free reign. Any stricture, any obstruction, any challenge to biotechnological progress began to be considered an unfair or irrational or superstitious refusal to save people that could be saved.

After Bacon, the answer (largely implicit) to the question (largely unasked) "What should be the number one killer?" is a resounding, "Nothing." There are only bad and worse ways to die.

For the braver among us, those willing to conjecture about our own deaths, the answer might be "Old age." When pressed, most of us would like to die peacefully in our beds, having been cogent and independent up until the very end, with a minimum (if not a complete absence) of any kind of suffering or disability.

In its more temperate moments, that is the (more likely to be stated) goal of medicine, as well.

But as Joel Shuman notes in the essay "The Last Gift," the WHO and the Department of Health and Human Services do not recognize "old age" as a cause of death. Something specific must be named.

Thus every recorded death in the United States must have a medical condition, problem, or failure as its cause. And when every death is a medical failure, there is no death that might not be prevented or forestalled with technological improvement. Heart failure is a condition, a problem--not a natural terminus. Liver failure is not what happens when one's body has reached its natural capacity to filter its blood--it is the result of specific medical processes, any of which might be susceptible to our control.

There is, then, no natural limit to the reach of medicine. There is nothing that might not be prevented with a little more research, and thus there is nothing that should not be prevented. Any impediment to progress is morally equivalent to a death sentence for those suffering from whatever ailment may be helped by a proposed course of action.

It is appalling that 30,000 children per day die of starvation related causes. It should prompt urgent and concerted effort on behalf of the world's governments and NGOs against immediate and emergent causes (drought, crop failure, natural disaster, war), as well as against more subtle and possibly intractable causes (tyranny, poverty, greed).

But it is appalling not because all deaths are appalling. It is appalling because this earth provides more than enough food for us all, and because technology permits us to transfer the fruits of this abundant patch of earth to that distressed patch of earth, and because international diplomacy gives us the chance to convince even the worst tyrants to allow emergency aid to the starving. These deaths are appalling. These deaths are a result of human sin, or at the very least, of human inertia.

But is it possible to conceive of medical causes for death that are not appalling? not urgent? not inhumane?

There will always be a "top ten list" of causes of death. There will always be a top ten list of causes of death. Is it possible to conceive of a list that will not be a list of looming enemies?

If it is not possible, if there is no death from which we do not look to medicine to save us, we are in grave danger, though we do not know it.

Medicine becomes, in such a case, our god, and there is no end to the sacrifices it may demand of us.

In the "It's a Nice Gesture, But . . ." Category

Our winner is: Trinket Round-up Day!

A Minnesota hospital system, eager to show how serious it is about containing drug costs and making prescription decisions based on science alone, has conducted a hospital-wide purge of notebooks, pens, post-it notes, and the like with drug ads on them.

This very admirable gesture netted over 18,000 items, all of which are now banned--that is, doctors are banned from accepting such items as gifts from drug company reps.

One hopes that lavish cruises, expensive dinners, and opulent parties are likewise banned, but such was not specified. In fact, one suspects that drug companies will find ways to "work with the system" (read: work around the system) in order to do what they've always done.

Predictably, a pharmaceutical industry spokesperson called the trinket sweep "Draconian."

But personally, I found the last two lines of the article to be the most telling:

Many of [the hospital's] items will be going to the health system of the Evangelical Lutheran Church of Cameroon, which has three hospitals, and several rural health centers.

Irons said there shouldn't be a conflict of interest in Cameroon because the advertised drugs aren't available there.

Professional Ethics?

I am watching this judicial showdown with great interest.

First of all, by one reading, I, too, belong to a professional organization (i.e., The United Methodist Church) that has its own professional licensing procedures (The Board of Ordained Ministry). Although my organization's professional licensing procedures are not in any sense overseen, supervised by, or practiced at the mandate of any federal or state legislation, there is at least one major circumstance in which my authorization as a pastor is linked to my authorization to provide a legal service: that is, marriage.

What if my professional organization's licensing procedures were in conflict with the state's guidelines concerning the practice of performing marriages? This could potentially come up, given that my professional organization currently forbids its members to officiate at weddings that are considered legal in some states. I am not aware of any cases where my professional organization has exercised its authority in this matter (the UMC is not exactly known for its episcopal backbone), but what if it did? Would the state recognize the right of a professional organization to set its own ethics, even to the inconvenience of the state or its citizens?

This problem is much more acute in the case of medical practitioners whose ethics conflict with the state's interest in carrying out its business. And the scalpel cuts both ways, politically speaking: at present, doctors are permitted to refuse to perform or refer for procedures or treatments to which they have a moral objection, even where state law has recognized access to those procedures and treatments as a civil right. Generally speaking, those who would be in support of the Medical Board's attempt to do an end run around the law with regard to the death penalty tend to be highly critical of practitioners' attempts to do an end run around the law with regard to abortion and certain forms of birth control.

I'm very, very curious to see how it will play out.

Christian Bioethics?

This past week, I began a four-week lecture series in a local church's Sunday School class. The parish, a significant portion of which is comprised of doctors and lawyers, had requested a class in Christian bioethics.

Believing they were expecting a four-week class in "which side to come down on" ethics, and hoping to problematize their approach somewhat, I decided to focus on biblical portrayals of health and sickness for the first three weeks of the class. We won't get to "Issues in contemporary medicine" until the last week.

The first class focused on Old Testament depictions of health. I depended heavily on observations by Norman Wirzba and Ellen Davis on the holistic nature of the Hebrew concept of Shalom--a concept that included human health, of course, but also the health of the land, of the people's relationship to its God, of the politics of the people, and of interpersonal relationships among the people. Not just health, but justice, mercy, forgiveness, love, economic responsibility, and environmental stewardship are encompassed in the biblical concept of health and wholeness.

We looked at texts like Isaiah 65 and Leviticus 26 to ground our understanding of God's desire for all of creation to share in God's Shalom. I'm hoping that they begin to see that "health," as we moderns understand it (i.e., the absence of pathology in an individual body), is a paltry substitute for Shalom.

Books in Review

Hector Avalos, in Health Care and the Rise of Christianity, makes the case that a study of the health care milieu in which Christianity arose is necessary for understanding the attraction that Christianity might have had for, particularly, the chronically ill in the Greco-Roman world.

Avalos helpfully surveys Jewish and pagan sources for indications of the values and practices surrounding sick members of those societies, particularly with respect to chronic illness. The survey of pagan culture is particularly helpful (at least for this non-Classicist) in that it enumerates the different health care options available to inhabitants of the Roman world, as well as the likely cross-pollination between Jewish monotheism and Roman paganism.

I am not conversant enough with Classical sources to know whether his presentation of health and sickness in the Roman world is accurate, but I was disappointed with his survey of Judaism. He dealt almost exclusively with the canonical texts, and seemed to weigh the New Testament critiques of Pharisaism rather more heavily than may be warranted. He did not seem to make use of more modern (and more charitable) studies of Jewish culture in the Second Temple period.

Additionally, his reading of the canonical texts was deeply problematic. He seems to have found in the texts a deep concern for protecting the state (meaning, especially, the levitical priestly hierarchy) from the burden of the chronically ill and underproductive. He takes the strict regulations concerning purity and contamination to be less interested in regulating the spread of contagious illnesses than in isolating and stigmatizing those with chronic illnesses which left them unable to be economically productive. His evidence for this interest is scant--he makes the point that the gradated requirements for thanksgiving offerings after healing (as in Leviticus 14) acknowledge the possibility that chronic illness may render a person economically unproductive, but he implies that levitical regulations are intended to marginalize those persons who have become poor.

He seems to have missed the deep concern for the poor and economically unproductive evident throughout, especially, the priestly code. The passage in question, for example, could be read as a particular effort to include those who have become poor through chronic illness and to mitigate the effects of their disadvantaged position. Economic disadvantage and unproductivity, in other words, is not an impediment to participation in the liturgical life of the community. Chronic illness is, to be sure, but there is little to no evidence that the Jewish community isolated and stigmatized the economically unproductive on a regular basis. Contagion and purity concerns are a much more convincing read of the levitical regulations regarding blood and bodily fluids.

That said, his more basic point is quite sound: whether or not such was the intention of the levitical code, and whether or not the Second Temple Jewish community practiced the levitical code exactly as written, the effect of the canonical regulations concerning chronic illnesses was to create a sub-group of people who would be particularly interested in the healing ministries of Christian missionaries, as well as the theological commitment to non-isolation of "sinners" and lepers.

Both Judaism and paganism, by Avalos's read, created a demographic group of disaffected members of society that would be attracted to Christianity precisely because it rejected (at least in its canonical texts) the very practices that had isolated them from their own societies. This partly explains, Avalos contends, the tremendous growth in the first decades after the death of Christ.

Psychologists Scrap Interrogation Ban

Well, I really like how the APA was thinking here, in the proposed ban. Even though it was ultimately not carried, I liked what they were trying to do.

I'm not sure that they've read their history, though. The Methodist Episcopal church of the nineteenth century passed a ban on ordained pastors owning slaves. The first person to challenge that ban--a Bishop Andrew--was remonstrated and threated with expulsion. All this did was lead to the formation of the Methodist Episcopal Church, South.

I fear that if any such professional organization were to try to enforce such a ban (like the AMA's ban on doctors' participation in executions), we would simply find ourselves with two national professional organizations where once there was one.

Terminal Does Not Equal Disposable

A federal appeals court decided yesterday that terminally ill patients do not have a constitutional right to access highly experimental treatments for their (terminal) conditions, following a longstanding tradition among bioethicists that refuses to see terminally ill patients as disposable.

(Yahoo article here)

While a dissenting judge was appalled at the court's apparent willingness to interfere in what she considered a private choice to pursue life at all costs, I think the writer of the majority opinion and the FDA spokesperson who commented on the decision had the better view of the status, if you will, of terminally ill patients.

The FDA spokesperson was quoted as saying that the decision appropriately balanced the needs for public safety and access to as yet unproven treatments. In her view, then, the terminally ill patient is still a member of the public whose safety the FDA was founded to protect. Like all other patients, the terminally ill patient can be taken advantage of by researchers (whether unscrupulous or merely overoptimistic) and can be harmed by lack of proper scientific knowledge. Their desperate circumstances must not be seen as an excuse to forgo the normal protections and safeguards which are given to the general public (even if the same circumstances lead them to wish to forgo those protections themselves).

The writer of the majority opinion implied the same valuation of the terminally ill patient--their deaths could be hastened by an unapproved treatment, and that premature death would be as much a tragedy as if it were a non-terminal patient.

While the desire to extend every possible opportunity for a terminally ill person to be healed is laudable, it often goes along with a more sinister (and usually unarticulated) re-valuation of the place of the terminally ill person in society. Virtually every time it is proposed that rules, procedures, standards, and policies be different for the terminally ill patient, the difference is intended to mark a separation of the dying patient from the general public, even when the differences are intended to benefit the dying patient. These special policies and procedures proclaim, "The dying person is a different kind of person. The normal rules don't apply."

If this breaking of the "normal rules" meant an increased participation in the life of the community (as in some monastic orders, where the community rushes to the bedside of the dying brother or sister to be with him or her in death, even if it means that the liturgical practices of the community are interrupted), I would be for it.

But it never does, does it?

A Philosophical Disease: Bioethics, Culture, and Identity

A Philosophical Disease is a Wittgensteinian critique of Western biomedical culture. Carl Elliott engages the intersection of language and our construction of reality, morality, and relationality.

For an example of how this sort of critique works, Elliott's discussion of the construction of gender is paradigmatic. There are a number of medical conditions--including birth defects, genetic abnormalities, and medical mishaps--which render a person's sexual identity . . . well, complicated.

In one part of the Dominican Republic, one such condition is sufficiently prevalent that there is a name for it: guevedoche. (Penis-at-twelve.) Individuals with this genetic condition are genotypically male, but appear female from birth through puberty. Most guevedoches, although they had been raised as females, make the transition to male societal roles after puberty--including marrying women and taking jobs usually given to men. It is not so much that this culture is blase about gender roles (quite the opposite); it is rather that their experience with a particular condition allows them to code for a third gender, as it were. They have the experience of it, they have a name for it, and they have cultural practices which surround it.

By contrast, the US has retained a more strict understanding of the world as divided into male and female. Thus, their cultural practices surrounding the same genetic condition--or conditions in which gender identity is similarly ambiguous--are different. They have a medical name for the condition (5-alpha-reductase deficiency), but not for persons afflicted with the condition. Indeed, the cultural experience of such conditions is so rare that medical practices surrounding these conditions tend to involve surgery to make the genitalia match the individual's perceived sexual identity. (That is, if the individual feels more "female," the genitalia are surgically altered to match that feeling.) American language and experience is almost exclusively bound by the male/female dyad, such that surgical intervention is required to make one's biology match the linguistic and philosophical convention.

Elliott similarly investigates the way language about identity intersects with psychiatry. These chapters were some of the most interesting, as that intersection has received far less attention than it should in the bioethics literature. How does severe depression affect competence to consent? Do emotional ties reduce or enhance rational decision-making? Why do we have an intuitive sense that a willingness to sacrifice oneself is morally praiseworthy, while a willingness to profit from someone's sacrifice is morally reprehensible?

This is, in addition, an eminently readable book. The motivated amateur could certainly tackle this book, although it is geared toward an academic audience. If your interest is in the culture of medicine--not just the hot topics in bioethics, but the culture in which these topics get discussed--this is a book worth reading.

"Lybrel says 'You don't need a period.'"

"Surveys have found up to half of women would prefer not to have any periods, most would prefer them less often and a majority of doctors have prescribed contraception to prevent periods.

. . . . . .

Most doctors say there's no medical reason women need monthly bleeding and that it triggers health problems from anemia to epilepsy in many women. They note women have been tinkering with nature since the advent of birth control pills and now endure as many as 450 periods, compared with 50 or so in the days when women spent most of their fertile years pregnant or breast-feeding."

I really thought we had moved past early-eighties feminism, where women had to become honorary men in order to be equal.

Did you notice how the justifying moves go? A) Most women don't want to have periods. B) There are women for whom menstruation presents a medical problem. C) Therefore, this product is okay. D) And plus, we've conquered the inconvenience of childbearing and lactation. This is just one more inconvenience to conquer!

So, once again, a potential (hypothetical? rare?) medical problem is used to justify the development of a product that will be prescribed to the population at large, apart from any medical need. Another wildly profitable product for pharmaceutical companies--because of our incapacity to endure any sort of inconvenience.

Why are women's bodies so to be feared and despised?

Nuns Continue Calcium Study

I know this was supposed to be a sweet story about a bunch of grandmotherly-type ladies who have been contributing to scientific knowledge for decades, but I couldn't help thinking how it exemplified the sort of gender blindness that plagues biomedical research.

Let me give you an example of what I mean.

What are the top three symptoms of a heart attack--do you know?

[Takes responses from the audience]

Yes, that's right. Chest pains, tingling arms, and shortness of breath.

Actually, that's also wrong. Those are the top three signs in men. In women, it's totally different. Bet you didn't know that, did you?

Bet you also didn't know that most pharmaceuticals are not tested on women of childbearing age--men and post-menopausal women (if women are included at all) form the research pool for most drugs. Between a woman's monthly hormonal fluctuations and the possibility that she might be/become pregnant during the study, she is considered a completely undesirable subject for research.

Even if the drug in question is likely to be prescribed to women of childbearing age.

Isn't that interesting?

Anyway, back to the nuns. According to the article, this study has been the source of the government's recommendations for calcium intake for women for decades. The study population is comprised exclusively of nuns--a very convenient study population, the researchers noted with glee, because of their lack of family commitments. (Women with families tend to be too busy for such an involved longitudinal study.)

Hmmm . . . does that make you think anything? Lack of family commitments, lack of family commitments . . . hmmm . . . Gosh! These seem to be women who don't have children!

So, "scientific" recommendations about women's calcium intake are primarily based on a study whose research population is comprised exclusively of women whose bodies have never done what over 80% of women's bodies will do some time in their life.

Anybody see a problem here?

It's the same problem as the pharmaceutical studies, really. The normally-functioning female body is seen as an impediment to proper research, so it is ignored during the period of research. Presumably, if they think of it at all, scientists are assuming that pregnancy is something that is "added on" to a "normal" female body. So, if we know what "normal" women need, then we can just slap on some extra pregnancy recommendations onto that.

There seems to be no understanding whatsoever that pregnancy and childbearing (much less childrearing) might change a woman's body such that her needs are completely different from these darling nuns' needs. That pregnancy and childbearing are not conditions superadded onto a "normal" body--they are constitutive of "normal" for the vast majority of women.

You'll forgive me, then, if I don't ask "How high?" every time the "latest nutritutional study" says "Jump!"