Up a slippery slope

The irrepressible Rick Santorum was chatting with folks at James Dobson's American Heartland Forum in Columbia, Miss., February 3, when he got to the subject of slippery slopes and the example of the Netherlands, where, he said, elderly people feel the need to wear bracelets saying "Do not euthanize me" to keep safe from the murderous medics prowling the cities:

Because they have voluntary euthanasia in the Netherlands, but half the people who are euthanized every year — and it’s 10 percent of all deaths for the Netherlands — half of those people are euthanized involuntarily, at hospitals, because they are older and sick. And so elderly people in the Netherlands don’t go to the hospital, they go to another country, because they’re afraid because of budget purposes that they will not come out of that hospital if they go into it with sickness.

You can hear the audience gasping in horror: Those poor old folks! But it's not true, [jump]
obviously (the Washington Post's fact checker Glenn Kessler gives it an awesome rating of four Pinocchios, as having no factual foundation of any kind), as well as extremely offensive to our usually phlegmatic Dutch friends.

Santorum was not simply making this stuff up off the top of his head, as you might suppose; his factoids belong to a kind of meme, or myth as I prefer to call it, that has been evolving over the past 20 years. The story of how these imaginary data came to exist is instructive, and includes a very elegant case of retroactionary thinking.

1. The Remmelink Report

In 1990 a Dutch parliamentary committee of inquiry chaired by the former attorney general Jan Remmelink carried out a study of medical practice relating to euthanasia in the Netherlands, to see how the situation had developed since the notorious case of Dr. Geertruida Postma, whose mercy killing of her mother in 1971 earned her a sentence of one week in jail, suspended, from a compassionate judge. The results were published by the principal investigators--R.B. van der Maas, J.J.M. van Delden, and L. Pijnenborg, in several formats in Dutch and English, most conveniently in the article "Euthanasia and other medical decisions concerning the end of life," in The Lancet 338/8761 (September 14, 1991—Ebsco link, you'll need a library account to follow).

What the so-called Remmelink Report reported, then, extrapolating from a close study of an initial sample of 400-odd physicians and 7000 deaths, was that 38% of deaths in the Netherlands in 1990 (54% of "non-acute" deaths) involved end-of-life medical decisions: providing high doses of opioid pain killers in a way that could possibly shorten the patient's life in 17.5% of the cases, withholding a treatment that could possibly prolong life in another 17.5%, and practicing active euthanasia or assisting a patient's suicide in about 2.1%. A further 0.8% of the total did not meet the definition of euthanasia, in that the decision was made without an explicit and persistent request from the patient; mostly on the basis of the patient's previously expressed wish, and otherwise when

the patients were near to death and clearly suffering grievously, yet verbal contact had become impossible. The decision to hasten death was then nearly always taken after consultation with the family, nurses, or one or more colleagues.

When the use of drugs for the alleviation of pain and symptoms (APS) might shorten the patient's life, generally only by a few hours or sometimes days, the physician discussed this with the patient only 40% of the time; most of the rest (73% of the subgroup) were incompetent. In nearly all cases of APS, the physician's primary aim was to alleviate pain, but in 6% of that total it was to shorten the patient's life.

In non-treatment decisions (NTD) the primary aim was "not prolonging the life" of the patient in half the cases, and the amount of "life foregone" was considerably greater: more than a week in a third of the cases, and in a very small number as much as six months. The decision had been discussed with the patient just 30% of the time, and 88% of the rest were incompetent.

2. The Fenigsen Rejoinder
Richard Fenigsen, a Polish cardiologist who had been living in the US since his mandatory retirement from a Dutch hospital in 1990, found an alternative way of looking at the data, which he published in his "Physician-assisted death in the Netherlands: Impact on long-term care", Issues in Law & Medicine 11/3 (winter 1995). Exactly what he did is not clear, because he doesn't say, beyond "the figures presented in Tables 1 and 2 are taken or computed from the Report..." (my emphasis), but he seems to have found a way of calculating the percentage of APS cases where the drug was "intended to terminate life"—perhaps the full report of the Remmelink commission gives percentages for when the physician's secondary aim is to shorten the patient's life, in addition to the 6% as above where shortening life was the primary aim.

Extrapolating numbers for the 1990 Dutch death statistics as a whole out of the percentages, he arrived at the following table:

Legend for Chart:

A - Physician-Assisted Suicide
B - Active Euthanasia
C - Morphine Overdose Intended to Terminate Life
D - Total

                                A       B         C           D

With Patient's Consent        400     2,300     3,159      5,859
Without Patient's Consent      --     1,000     4,941      5,941

Total                         400     3,300     8,100     11,800

yielding that figure of 11,800, or 9% of all the deaths that occurred in the Netherlands that year, as the total number of active euthanasia cases—a bit more than half, as you see in column D, being without the patient's consent.

Only it really isn't euthanasia, whether by the official definition of the Dutch government or by the common practice of doctors since time immemorial ("We could keep him alive for a couple more hours, Mevrouw, or we could make him comfortable and happy for the little time he has left"). Fenigsen's real purpose is to create the numbers that will make the audience gasp—that 9%, and the idea that half of the cases of euthanasia are involuntary, and that's why he keeps his own role in the creation a bit of a secret, letting is seem as if they are the raw Remmelink data.

Be that as it may, the numbers found their way into Physician-Assisted Suicide and Euthanasia in the Netherlands: A Report to the House Judiciary Subcommittee on the Constitution by Chairman Charles T. Canady, September 1996 (based on testimony by Fenigsen, but footnoting only the Remmelink report as if that was what was being cited), and thence to an anti-euthanasia shop in Wisconsin called the Nightingale Alliance, from whom I suspect Fenigsen is getting some wingnut welfare (you can book him as a speaker through them), where they have taken the standard form of an unsigned page of Fast Facts about end-of-life decisions in the Netherlands (and it's not easy to find, either):

a. About 9% of all deaths were a result of physician-assisted suicide or euthanasia in 1990. (1, 2)
b. Dutch doctors practice active euthanasia by lethal injections (96.6% of all deaths actively caused by physicians in 1990). Physician-assisted suicide is very infrequent (no more than 3.4% of all cases in Holland of active termination of life in 1990). (3)
c. For patients who die of a lethal overdose of painkillers, the decision to administer the lethal dose of drugs was not discussed with 61% of those receiving it, even though 27% were fully competent. (4)
d. The Board of the Royal Dutch Medical Association endorsed euthanasia on newborns and infants with extreme disabilities. (5)
e. Well over 10,000 citizens now carry "Do Not Euthanize Me" cards in case they are admitted to a hospital unexpectedly. (6)
f. Cases exist where doctors administer assisted suicide for people determined to be "chronically" depressed. (7,8)

The reference numbers are to footnotes you can check out on the link. Again, the Fenigsen material is credited not to him, but to the report from which he cooked it.

Anyway, the Nightingale Fast Facts have circulated—without their footnotes—to Right-to-Life websites all over the country as well as sites for high school term paper plagiarists; I love to think that's where Santorum might have gotten his notions from, but the fact is that they're just floating around the circles he hangs out in and from which he draws such political power as he has.

The Hendin Handout

Fenigsen is also a source for the terrorized old people, which he cites from an article in De Volkskrant,  "Ouderen bang voor onvrijwillige euthanasie bij ziekenhuisopname [Elderly Afraid of Involuntary Euthanasia in Case of Admission to a Hospital]", June 9, 1993:

In 1993 the Christian Protestant Association of the Elderly (PCOB) surveyed 2,066 senior citizens and found that many feared involuntary euthanasia in case of admission to a hospital; some older people, out of fear of involuntary euthanasia, delayed their admission to nursing or senior citizens' homes, even when they could no longer care for themselves at their own homes.

Something like this really did happen (here's a story from the Reformatorisch Dagblad, for instance), but I don't know how relevant it is. Anyway the "Don't euthanize me" cards (or bracelets in Santorum's story) aren't there. That seems to go back to the psychiatrist Herbert Hendin, medical director of Suicide Prevention International, who wrote in his 1996 Suicide in America that

the Dutch Patients Association, a group organized by Protestants opposed to both euthanasia and abortion.... receives inquiries from people wanting to know if a particular hospital is "safe".... they distribute a "passport for life" indicating that, in medical emergencies, a patient does not want his or her life terminated without their consent. (From GoogleBooks)

Here he was not exactly wrong: the Nederlandse Patiënten Vereniging is indeed opposed to abortion and euthanasia; their levenswensverklaring is what we call in America a "living will", to be used when a patient is demented or comatose and cannot tell the doctor what she or he wants, but it only comes in the one flavor, advising them that you'd rather be a vegetable than dead; you must also specify whether you are Protestant, Rooms Katholiek, or Joods, and you have to pay. If you subscribe to a different, or no, religion or if you are looking for "do not resuscitate" you must work through a different channel.

Santorum's bracelets, however, have a quite different source. No, Santorum didn't make this up either. We can pinpoint the exact moment when it arrived: September 3, 2004, when Msgr. Elio Sgreccia, vice president of the Pontifical Academy for Life, presented the official Vatican attack on a Dutch proposal to allow children under 12 to request assistance in committing suicide. The reference is not to be found in His Grace's essay published that day in the Osservatore Romano, or in any of its press reports in Italian, French, and German, but is found in all the English ones:

The Vatican official said the Dutch law is rapidly moving away from assisted suicide and towards euthanasia. Many residents of the European nation wear arm bracelets telling doctors not to end their lives prematurely.

The Netherlands is the first nation in the world to allow euthanasia — which prompted millions of the western European country’s residents to wear bracelets asking doctors not to end their lives if they are severely injured.

Such legally sanctioned abuses have created a climate of fear among elderly persons and hospital residents. They wear arm bracelets telling doctors not to end their lives prematurely, or they relocate to nursing homes across the border in Germany where euthanasia is still illegal.

Ever since the Netherlands became the first nation in the world to legalize euthanasia, millions of Dutch residents have begun wearing bracelets informing doctors of their request not to be euthanized in the event of a serious injury. 

As well as one in Swedish (presumably they had to share in whatever the English-speakers got):

Nederländerna var det första landet i världen att tillåta eutanasi. Oroliga människor har börjat bära armband med budskapet på att de inte vill att läkarna ska avsluta deras liv ifall de blir allvarlig skadade.

Whether the bracelets were a feature of the press release in English and missing from the other languages, or whether His Grace delivered his remarks in person in several languages to the press but mentioned the bracelets only in the one, it seems clear that there was some kind of campaign to persuade Americans, and only Americans, that these imaginary bracelets really existed, for whatever strange, deep, Jesuitical purpose, with the immediate consequence to us that the idea etched itself into Senator Santorum's heart, or hovers around  in the rafters of his mind with the other little factoids, ready to spring out in the form of an "argument" about a slippery slope.

The Triumph of Time, ca. 1480-90, by Jacopo del Sellaio. From Kunst für Alle.

Oh, and a slippery slope that goes uphill; that's the retroaction part. The Remmelink study was repeated in 1995 and 2000;  according to the report on the third one (Bregje D. Onwuteaka-Philipsen et al., "Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001," The Lancet 362/9381 (August 3, 2003)), researchers ascertained that

The rate of euthanasia and explicit requests by patients for physicians' assistance in dying in the Netherlands seems to have stabilised, and physicians seem to have become somewhat more restrictive in their use. Euthanasia remains mainly restricted to... patients with cancer, people younger than 80 years, and patients cared for by family physicians, who were already frequently involved in 1990.

But that left the pro-coma forces, I think, in a somewhat peculiar position; they found themselves attacking a law passed in 2001, while their data, the only data Fenigsen had really tried to analyze, came from 1991. So their arguments tended to take on a retroactionary form, as in an "Adventures in Old Age" column in Psychology Today by Ira Rosofsky ("Assisted Suicide? How About A Dutch Treat?"):

In 2002, the Dutch enacted The Termination of Life on Request and Assisted Suicide Act, which formalizes the rules for assisted suicide. It adds the provisions that a second physician reviews the case, and that the patient be at least 12, although parental consent is required for those between 12 and 16....

There are unintended—or maybe not so unintended—consequences of Dutch practice. In 1991, the government published the Remmelink Report on assisted suicide. It found that although about only 1 to 2 percent of deaths are from voluntary assisted suicide, much higher percentages are due-maybe as high as 15 percent—from termination of life sustaining procedures, and there may be a thousand annually who are sped on their way—perhaps with high doses of pain killers—without their consent, impermissible killing.

Yes, as we've seen so often, in the conservative argumentation a law may have consequences ten years before it is enacted!