- by Marnie Ko
Foothills Hospital nurses warn that genetic test procedures are unreliableA mother who underwent a difficult late-term abortion at Calgary's Foothills Hospital this winter tied up a birthing room for six days, according to a hospital memo. Another abortion had to be "accommodated" at the same time, occupying two of the hospital's nine labour and delivery rooms. Until last week, this information could not be legally reported. In April, the Calgary Regional Health Authority (CRHA) had secured a broad publication ban after this magazine published grim details about genetic terminations at Foothills. Nurses report that some infants survive for minutes or even hours, with medical staff forbidden to give them fluids or oxygen. "There is considerable anecdotal evidence that babies [who] have been diagnosed [before birth] as [suffering from] lethal anomalies have been born with none at all," said the memo, obtained by Alberta Report in June.
Before leaking documents to Alberta Report, Foothills nurses tried discussing their concerns with hospital administrators. They were instructed that all staff must participate in genetic terminations without exception. A hospital memorandum written by a senior administrator earlier this year stated, "It was made quite apparent in the [previous] memo I sent to them [nurses] that the unit must, at this time participate in this procedure. Not to do so at this time was not an option."
A new court order, issued two weeks ago, allows the media to publish information about genetic terminations, provided patients, doctors, or staff are not identified without their consent. Genetic terminations are performed when a doctor suspects that a pregnant mother's unborn child may suffer from serious abnormalities; the mother is chemically induced into premature labour. Guidelines set out by the Alberta College of Physicians and Surgeons allow mothers at any late stage of pregnancy to undergo an induced abortion, particularly if a doctor predicts that the infant might die within 30 days of birth.
Infants are not expected to survive a genetic termination. However, a Foothills hospital nurse says, "Lots of babies are born alive. Doctors hope the baby dies before being born, but not all babies do." The nurse adds that although genetic tests are "based only on probabilities, not a guarantee of problems," few women can withstand the pressure to abort which doctors often exert. She adds that doctors frequently use powerful arguments to persuade women that a genetic termination is the only option.
The nurse cites an example published in the Calgary Herald last month to illustrate her point. A mother told the newspaper that she underwent a genetic termination at Foothills Hospital last year. A routine ultrasound had revealed what appeared to be an abnormality in her fetus. "I was carrying a baby with a death sentence on it," concluded the woman. She apparently felt that her child was definitely doomed, with only the date of its death left within her control.
However, says the nurse, the diagnoses are often wrong. Foothills Hospital's management asked nurses last winter to submit their concerns surrounding genetic terminations after the incident of the "distressing" six-day genetic termination. States one memo, "When another genetic termination 'had' to be accommodated, this effectively tied up two LDR [labour and delivery] rooms, for an indeterminate period of time, to the possible detriment of women and families with normal pregnancy." The aborting mother was given what was "perceived to be very fragmented care," writes the administrator, adding that since November 1997, the number of genetic terminations has increased dramatically from "one to two per month, to sometimes one or two per week."
Furthermore, memos reveal that nurses "doubt the accuracy and confidence in the prenatal diagnostic methods." One document states, "7 nurses felt there was a huge issue around lethal vs. serious anomalies. They are often willing to participate in lethal anomalies, but not in the 'serious' category. These nurses also identified that the current policy and procedure is woefully outdated, and only discusses lethal, not serious anomalies. There is also considerable anecdotal evidence of cases that have been 'diagnosed' as lethal anomalies that have been born with no anomalies at all." Nurses are uneasy about the "amount and kind of counseling offered" to mothers contemplating genetic termination, a memo reports. "It was felt by a number of nurses that there might not be enough time between diagnosis [of a potential abnormality] and making the decision to terminate the pregnancy."
Last month, the CRHA released to other news outlets copies of the leaked memos which this magazine had previously obtained. But the health authority acted only after Alberta Report publisher Link Byfield attached copies of the memos to his court affidavit so that the uncensored versions of these documents would become public. Even then, the officially released memos were censored. Blocks of text were deleted, including details of the prolonged six-day genetic termination.
CRHA privacy coordinator Elizabeth Denham commented that the names of patients were removed (no patients were named in any documents), as were the identities of medical staff. The Alberta newspapers failed to report the discrepancy. But a June news story in the National Post pointed out that "significant information-including the nurses' concerns about potential misdiagnoses-which had nothing to do with confidentiality, was held back" in the documents released. Ms. Denham justified the CRHA's deletion of information, saying it was "potentially inaccurate" and "anecdotal" and that the health authority feared that the "credibility of doctors" might be harmed. The Post criticized the CRHA's verbal "acrobatics" in an editorial. It pointed out, "At first, CRHA spokesman [Dr. Ian Lange] declared that 'therapeutic abortions' are not performed at Foothills, but 'genetic terminations' are. Later he corrected himself: No 'genetic terminations' had been performed, just 'induction of labour for infants with a lethal abnormality.' Initially the CRHA admitted to 40 such, er, procedures last year; then they denied them altogether. Then they admitted to 51."
Roman Cooney, public relations spokesman for the CRHA, accuses this magazine of being inaccurate. "Frankly, what most of AR has reported has not been, from our perspective, an accurate reflection of the situation," he charges. Mr. Cooney denies that staff are forced to participate in genetic terminations if they find them morally questionable, insisting nurses "have not been forced to do them and they are not being forced to do them."
The CRHA spokesman, who worked as a senior Calgary Herald editor until April, acknowledges that he is "aware that concerns have been raised" surrounding the accuracy of testing. But he adds, "[I'm] not aware that what the nurses have said is accurate." Informants, however, insist that all of their accounts-including details of babies being born alive and the denial of fluids and oxygen to those who survive genetic termination-are truthful. Points out one Foothills nurse, "I don't have any reason to lie. I could lose my job for talking. But what the hospital says is a pile of trash."
She notes that Foothills hospital administrators and the CRHA have made it clear to nurses that when the informants are found, they will lose their jobs, be labelled "squealers" by colleagues, and face a formal complaint charging breach of confidentiality with the Alberta Registered Nurses Association. The complaint is a serious one; it results in immediate licence suspension. So nurses take serious risks when they reveal what goes on behind closed doors on Unit 51 at the Foothills Hospital. As one hospital staffer explains, "Anyone who gets caught will never work as a nurse again. The CRHA will make sure of it."