Standards of Practice and the Pain of Premature Infants by Jill R. Lawson

Our son Jeffrey was born in February, 1985, at 25-26 weeks' gestational age, weighing one pound eleven-and-a-half ounces (760 grams). He was responsive with Apgar scores of 3 and 7, but he was very sick.

He was immediately placed on a respirator. He developed several lung disorders, a moderate brain bleed, and kidney and liver problems. After two weeks, an artery intended to help a fetus's circulatory system bypass the lungs while still in the womb wasn't closing as it should.

So Jeffrey was transferred from Columbia Hospital for Women to Children' Hospital National Medical Center for patent ductus arteriosus surgery . (PDA surgery is the most common operation performed on preemies.)

At the same time he was to have implanted in his chest a semi- permanent secure catheter to deliver liquids and medications when regular intravenous lines are difficult to maintain. On the morning of surgery, which had been scheduled three days in advance , Jeffrey became somewhat unstable when taken to the operating suite.

He was not moribund. He was not comatose. He was still, as the transport team had described, "a very small pink male ... very active ... with appropriate responses and gestures".

This was not rushed, emergency surgery but rather surgery scheduled to increase the likelihood of improvement over a length of time. In spite of this, the anesthesiologist decided the operation would proceed without delay, and she paralyzed him, using no pain relief or anesthesia of any type either before, during or after surgery.

It was beside the point that I had been promised before I signed consent forms that Jeffrey would be given general anesthesia . And somehow it was possible for professionals who perceived a baby as too fragile to tolerate general anesthesia to perceive that same infant as able to withstand open-chest surgery without pain relief.

My husband and I were not told of these decisions, even though one of us was present most of the time, including before and during surgery. On the contrary, on two successive occasions after the surgery, Jeffrey's nurses told us that he was so still because his anesthesia was still wearing off.

Jeffrey died five weeks after surgery . Shortly before his death, a nurse friend had mentioned that there was a time when babies were not anesthesized for surgery. After recovering from my own baby's death, I called his doctor for reassurance.

Instead the anesthesiologist informed me that she had not used any anesthesia or analgesia on Jeffrey. He had only been given a paralyzing agent called Pancuronium bromide (Pavulon).

She said it had never been demonstrated that babies can feel pain , and that it had not occurred to her to use alternate methods of pain control after she ruled out general anesthesia. She also told me Jeff's blood pressure had been too low to tolerate anesthesia (other physicians who have reviewed his records have concluded that his pressure was satisfactory for a preemie that size).

The anesthesiologist never told our son's surgeon that she was going to withhold anesthesia. Therefore he never had a chance to make an informed decision, just as we the parents never had a chance to make an informed decision.

The anesthesiologist's department chairman defended her by claiming that Jeffrey's pain was c omparable to the discomfort experienced when a patient has a tube placed down his throat, and also that chemicals produced in the brain under stress should have been sufficient to mask deep pain. But I learned later that the cerebrospinal fluid levels of such endorphins required to mask pain in human adults are 10,000 times higher than the highest recorded levels in newborns (Foley, Kourides, Inturrisi, et al., 1979).

And Jeffrey endured more than having a tube placed down his throat, which is usually a five-minute procedure. For one and a half hours he had holes cut on either side of his neck, another hole cut in his right chest, a catheter inserted in his jugular vein, and these holes stitched shut. We were told by the surgeon afterward that they had trouble securing the catheter, so they repeated that procedure .

Next Jeffrey was cut open from his breastbone around to his backbone . Then his flesh was lifted aside, his ribs pried apart, his left lung retracted, and the blood vessel near his heart was tied off. Then the tissues were stitched together in layers and a final "stab incision" made in his left side to insert a new chest tube.

Jeffrey's surgical charts indicate that when he was cut open, his blood pressure, pulse rate and oxygen requirements all jumped, classic signposts for pain . After surgery his pulse and pressure remained elevated for two days before subsiding to previous levels.

The night following surgery Jeffrey's lab test results went haywire. The resident on duty called us and said that Jeffrey might die before morning since his body had started to digest itself (catabolism) due to stress and shock . He had to be resuscitated as his heart, kidneys and liver failed due to the kind of severe chemical imbalance described by Drs. Anand and Hickey (1987) among infants unprotected from pain during PDA surgery. His dependence on his respirator increased and his brain bleed worsened.

Later, when I met informally with hospital staff, Jeffrey's anesthesiologist represented to me that Pavulon could be construed as affording some pain relief. But Pavulon has no effect on pain .

In addition, adult patients who have been given this agent report discomfort caused by Pavulon itself, notably prolonged sensation of drowning in one's own saliva. Besides that, Pavulon can create side effects as potentially harmful as some anesthetics (Taylor, 1980).

When I asked why the operation proceeded without waiting till Jeffrey was having a better day, if that was indeed the problem, the anesthesiologist replied that such decisions are up to the surgeon. But she never told the surgeon that she was going to withhold anesthesia .

I was the one to tell him, five months later. Therefore he never had a chance to make an informed decision, just as we the parents never had a chance to make an informed decision . The anesthesiologist also presented the changes in pulse and pressure by claiming that they only increased after the artery was ligated and that this was welcome evidence of increased circulatory capability.

But the chart shows the biggest jump occurred when Jeffrey's chest was cut open , not after ligation. And since his pulse and pressure subsided to previous levels two days later and remained down till he died, her claims don't make sense to me.

After these initial contacts with the physicians involved, I can remember assuming that all that remained to be done was to call people's attention to the facts and then everyone would see that this doctor should never practice medicine again .

I was wrong.

I discovered instead that Jeffrey's maltreatment wasn't due to one individual's aberration; rather it happened frequently .

The Chairman of the Committee on Fetus and Newborn of the American Academy of Pediatrics wrote that "We did a small survey of neonatal units around the country about this issue. We found that there are still some units that regularly operate on the smallest, sickest premature infants using the same technique that your son experienced" (Poland, 1986).

A researcher at the University of Iowa's College of Nursing who had given more than 100 presentations on the topic of children's pain wrote that nurses in her audiences who worked with infants and premature infants in hospitals around the country, reported that, with very rare exceptions, no anesthesia was the rule, rather than the exception for surgical procedures (Eland, 1987, emphasis in original).

Such awareness was fairly common among doctors, nurses and technicians. A second friend and my stepmother, both former nurses, said, "Oh, yeah, I knew about that," as soon as I told them what I had discovered.

When I went to the National Library of Medicine, even though I had never seen medical literature before, within two hours I found three articles detailing PDA surgery on infants without pain relief . Two noted current practices of using no anesthesia and then outlined success using fentanyl anesthesia.

The third article advocated only that "The surgical procedure is safely accomplished with oxygen and pancuronium as the sole agents" (Wesson, 1982).

I also discovered through other articles that reputable physicians writing in reputable journals had taken, and quite passionately, opposing positions on the existence of infant pain . The literature also revealed that reasonable safe, potent anesthetics had been available for five years for even the smallest preemies (Berry and Gregory, 1987).

But many pediatric anesthesiologists, surgeons and even some neonatologists made the decision not to use them. This is in contrast to the fact that adults are uniformly given anesthesia/analgesia even though this is acknowledged as the riskiest part of surgery. We accept these substantial risks to avoid inordinate suffering .

Following my search of the literature and my meeting with staff at Children's Hospital, I consulted with two attorneys. They concluded that there are no laws extant requiring doctors to mitigate pain and that unquestionably the doctor involved met "standards of practice".

Then I approached many medical groups, advocacy associations and individuals for help. Most either declined to help or supported the doctor's actions . These include, but are not limited to, the District of Columbia Board of Medicine, which is the local licensing and regulatory agency; the Medical Society of D.C., which wrote that

It appears there is controversy in the literature about the appropriate form of anesthesia for small infants and that the transmission of neuro-impulses in such a young child may not be sensed as pain in an immaturely developed brain. The patient may not sense the pain as such .

The anesthesiologist must balance the risks of using anesthesia versus allowing possible pain. In Dr. _________'s judgment, it was far safer for the patient to undergo the surgery with close observation and monitoring. It appears she was dealing with a difficult anesthesia situation in a very sick child and that she acted ethically and in good faith with the best interests of your child in mind. (Barr, 1986);

also the American Civil Liberties Union, to whom I appealed they try Jeffrey's case on an age-discrmination basis; our medical insurance plan, whom I asked to apply financial pressure to hospitals to use humane methods; the American Pain Society; the Hastings Center Report, a publication concerned with bioethical issues , which declined to print anything on the subject on the basis that it was not sufficiently concerned with ethics ; even "Dear Abby, who said the doctor must know best and that this didn't have anything to do with vivisection , which she opposes; the Council on Ethical and Judicial Affairs of the American Medical Association; the AMA's section on Medical Science and Education; the Joseph & Rose Kennedy Institute of Ethics at Georgetown University; the American Board of Anesthesiology; the American Society of Anesthesiologists; Children's Hospital's patient representative, who asked whether I was getting psychological help when I complained; the U.S. Department of Justice Baby Doe unit, which had listed cruel and unusual treatment as one of its three criteria for intervention ; the D.C. Child Welfare Division; the D.C. Parents of Preemies support group, whose then president declined to get involved on the grounds that parents would rather not know about this ; the Office for Civil Rights of the U.S. Department of Health and Human Services; the U.S. Surgeon General, himself a pediatric surgeon; the Children's Defense Fund; the U.S. House of Representatives Select Committee on Children, Youth, and Families; the National Committee for the Prevention of Child Abuse; the National Perinatal Association; and the then Chairman of the Section on Anesthesiology of the American Academy of Pediatrics.

One mother said to me, "I never thought to inquire about anesthesia. I'd as soon have asked if the surgeon was plannimg to wash his hands before the operation".

One of the more disturbing experiences in this process was the comment made to me by the senior neonatologist on staff at Children's Hospital. At a meeting concerning Jeffrey's treatment, he said that what happened to my son didn't matter because he was a fetus. When I asked how old someone has to be to feel pain , he placed the line of demarcation at about two years .

Other parents tell the same story. Cases which are a matter of record include Carmen Machado, who "survived six brain surgeries, often without the benefit of anesthesia" (Machado, 1985); Jacob Schrag, who died during abdominal surgery for necrotizing entercolitis without anesthesia in Oakland, California, in April, 1988 (Stern); Michael Londner, who had two brain surgeries without anesthesia in Miami, Florida in late 1981 (Londner, 1988).

There are other cases too. In most instances parents checked their babies' records after reading about Jeffrey, and in that process they learned for the first time what had been done to their children . Ultimately my son's story attracted national and international attention. People started talking about the issues , and a few remarkable individuals and groups did effect changes.

The first article appeared simultaneously in the popular press and in a medical journal in November, 1985 (Scanlon). In June, 1986, the Journal Birth printed my letter concerning surgery on infants without anesthesia . In August, 1986, the Washington Post printed a feature article which was carried over UPI wires and reprinted in several major city newspapers. That article in turn was picked up by Cable News Network, which provided extensive coverage of this issue the week of October 17, 1986.

That coverage was discussed and shown at the American Society of Anesthesiologists ' annual conference the next week, and at about the same time I received word from Dr. Ronald L. Poland that the American Academy of Pediatrics was going to bring out a policy statement .

The American popular and medical specialty press generated a total of seventeen articles and television segments about our son's treatment. Recently there has been a flood of publications and conferences on the whole topic of pediatric pain control, most of it positive.

The resolution of the American Academy of Pediatrics detailing the new consensus protecting infants from unnecessary pain during surgery was published in the September, 1987 issue of Pediatrics, endorsed unanimously by the House of Delegates of the American Society of Anesthesiologists at its annual conference in October, 1987, and printed in the ASA's Newsletter in December, 1987.

Children's Hospital staff are now using painkillers on most, if not all, babies (Fletcher, 1987). And Dr. Anand was invited to speak there this past summer.

I feel heartened by the response from concerned individuals and by evidence of a positive change in professional and public awareness since our son's surgery. But I know human nature well enough to realize that people change slowly, and some people never change.

A consensus that is only theoretical doesn't help patients . Nance Butler (in press) has described some of the factors which exert a powerful influence on physicians and which result in their not accepting anesthesia for infants . So, for at least the next few years, some babies will still suffer unnecessarily.

The doctor who failed to mitigate the pain of our son also caused our whole family pain. We have to remember Jeffrey with a world of hurt . Our son is dead, and we can live with that. What is so hard to live with is his life. The doctor who "anesthetized" Jeffrey diminished his quality of life and his chances for survival. Nothing can undo that or bring him back to us.

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Update by Peter Aleff:

Mrs. Lawson was prescient in predicting that some doctors would still not accept anesthesia for infants. It turns out that conveying common sense to medically indoctrinated minds resembles the labor of Sisyphus in the Greek myth who had to roll a rock up a steep hill only to have it crash back down each time.

The official statements Mrs. Lawson obtained from the American Academy of Pediatrics and similar guilds admitted at long last that babies feel pain and deserve protection from it. That was the medical priesthood's' public show and promise to make the scandal go away.

However, that does not mean the barbarian doctrine is dead. A more recent study of circumcision suffering published in the Journal of the American Medical Association found that some physicians still believe newborns neither feel nor remember pain , as reported in the Philadelphia Inquirer on 12-25-97 under the title: " New study supports use of anesthetics in circumcisions".

Second update :

The editorial in the August 2002 issue of Scientific American comments under the title "A Real Pain" that even for adults , pain relief is still not routine in many very painful situations, such as snipping off internal live tissue samples. The editors cite a lack of knowledge and of interest among doctors , concerns for the risks and the monitoring costs these cause, and a medical culture that seems

"to believe that pain ought to be part of medicine and must be endured".

This troglodyte attitude of doctors supposed to care for their patients endures into the twenty-first century, and it will only end when those guilty of such gross gullibility are held accountable for the consequences of their unsupported, unscientific, and patient- harming beliefs .

Continue to our "Help for Victims" page for a suggestion to expose and thereby end some similarly baby- torturing practices that are still common in intensive care nurseries today.