Such Agony ‘Absolutely Unnecessary’ : Doctor Sees Mission to Free Child Burn Victims of Pain

More than the parents who stare into their clear plastic tents, more even than the doctors and nurses who tend the tubes and machines that feed them, medicate them and breathe for them, the children’s companion is pain.

They have been burned, many of them, from the hair of their heads to the soles of their feet. Just a few years ago, youngsters so tragically maimed by fire would surely have died. Now, they often survive but at a tremendous price in agony.

“Everything hurts,” said Dr. Stan K. Szyfelbein. “Every single thing.”

When Szyfelbein looks into the sterile plastic tents at the Shriners Burns Institute, where he is chief of anesthesiology, he sees failure. His humane art, so perfected in the operating room, often fails to relieve the misery of burned children’s waking hours.

Miracles, Shortcomings

Medical technology restores the victims’ fluids. It outwits the bacteria that invade them. It salvages and even crafts skin to cover their exposed flesh.

It gives them back their lives. It does not, however, stop the pain.

Szyfelbein believes this torment could be vastly reduced. Pain can be conquered, just as infections can be. However, taking the misery out of healing requires a commitment to understanding the origins of pain and the strategies that circumvent it.

In the special case of burned children, that effort has been neglected, Szyfelbein said. He blames his profession, his colleagues’ widespread, if unconscious, belief that somehow children do not remember pain, that they indeed do not really even feel it. So, of course, they do not need analgesics to control it.

Szyfelbein has been listening to children’s screams for most of his professional life. He has even recorded them. Perhaps in those cries there is a language of pain, and a skillful translator could learn to distinguish true pain from fear.

“Children are my very special concern,” said Szyfelbein. He is a large man, burly and forceful, with a voice tinged by the cadence of Poland, where he was born.

“To be honest,” he goes on, “I don’t know if it’s my Aquarian sign that makes me sentimental and naive. However, I’ve made some enemies among pediatricians and surgeons by just simply defending those little kids by saying there is totally inadequate pain control.”

Now, Szyfelbein and two colleagues at Shriners, Dr. Patricia F. Osgood, a pharmacologist, and Dr. Daniel B. Carr, an endocrinologist, have begun Project Pain, a research program that they hope someday will relieve the suffering of burned children.

In the methodical way that science moves, they have begun at the very beginning--looking for ways to measure the sensation of pain itself.

They have found that blood levels of natural painkillers known as endorphins are directly linked to children’s pain. The higher their bodies’ production of these chemicals, the less pain they feel.

This work, published in the latest issue of the journal Pain, is a first step. It is a step, they believe, that will eventually let doctors measure pain as they do temperature and blood pressure.

“Burns are a horrible experience,” said Carr, “but maybe the pain after a burn just isn’t necessary. If you were shrewd enough in designing pharmacological approaches, you might isolate the pain response and suppress it, without affecting healing or breathing. It’s a tremendous goal, but, in theory, there’s no reason why it can’t be done.”

In the wards of the Shriners hospital, the patients lie motionless inside their sterile tents, each the size of a small bedroom. Some are hooked to half a dozen bags of fluids that drip into their veins. Some have breathing tubes down their throats so they cannot speak. Between the tents, mothers and fathers sit and watch, quietly and helplessly.

Eight layers of bandages cover the children’s burns. The worst are anonymous human forms, totally wrapped in white. Snapshots taken before their tragedies are taped to the tents, reminders of the faces these young people once had.

During the months of recovery, probably nothing is so painful as changing those dressings. It is a task that must be done twice a day, morning and evening. The pain gets worse as each successive layer is carefully peeled away. Sometimes a single dressing change takes three hours.

Nurses give them pain medicine, but it is often not nearly enough to deaden the agony.

“To deal with patients on a day-to-day basis, even the most dedicated nurses have to block many feelings,” said Nancy Atchison, a pain research nurse. “It’s a survival technique. Obviously, it’s very difficult for both. This ordeal is necessary for the patients’ recovery. The patients complain, and the nurses say, ‘You can’t be feeling that much pain.’ ”

Three years ago, a nationwide survey sponsored by the National Institutes of Health was conducted among hospitals that treat burn victims. Among the questions: How much analgesics are used?

“The thing that startled us,” Osgood said, “was that they more often gave children nothing at all.”

Said Szyfelbein, “Most of the physicians or nurses made a flat statement: ‘Children did not need any analgesia.’ This is not unusual. They will tell you that children always cry. They always scream. How do we know whether they have pain or not? In order, probably, to cure our own consciences, we say they don’t have pain.”

No Easy Solutions

Even when the will exists to relieve the pain of dressing changes and other unpleasant procedures, there are no easy ways to do this. The simplest solution would be to simply put the children to sleep during the procedure. That’s impossible, though, for the youngsters must eat to live.

Because they have virtually no skin, burn victims lose tremendous amounts of heat. To keep from digesting their own bodies, they must take in lots of calories to maintain their body temperatures. Since people must fast eight hours to empty their stomaches before they can be given general anesthetics, and, since there are two dressing changes a day, that leaves little time for food.

Even if the patients could be kept entirely on intravenous feeding, there is another problem. Anesthesiologists are not scheduled for routine work at night, when they would be needed for the day’s second dressing change.

Another possibility is narcotic painkillers. The difficulty here is fear of overdoses--and malpractice suits.

Different Needs

A standard pharmacology textbook lists recommended doses of these drugs for people of different body weights. However, not everyone’s needs are the same. Szyfelbein said that one child may require 10 times the recommended dose, while another might need only half. Yet physicians are reluctant to stray from the book.

“Everybody just follows that formula,” he said. “If you double the dose and something happens to the patient, there are terrible legal aspects. Practically any lawyer can say this is malpractice.”

Something had to be done. However, medical research is expensive, and Szyfelbein was afraid that his request for research funding would be rejected. At one point, he even considered playing his tapes of children’s screams through a hospital intercom if he could not get financing.

He never had to make that threat, though. The hospital’s board was enthusiastic about his proposal, and Project Pain began.

Measuring Pain

Since medical people complain that they cannot distinguish screams of pain from cries of fear, the researchers are looking for an objective measure of the sensation.

“Adult pain and analgesic studies are very well-established, but virtually nothing has been done with children,” Osgood said. “Our first task was to set up methods for trying to assess pain.”

Even an adult finds pain difficult to describe. However, for many children in the hospital, their burns were the first extreme pain they had ever experienced.

Eventually, the researchers built a big red thermometer so children could separate mild pain from intense. On this scale, zero represented no pain. Ten was pain as bad as it can be.

During dressing changes, the researchers held up the thermometer, and the children called out the number that described the depth of their pain. Before and after the ordeals, they drew blood samples so they could check levels of the natural opiate known as beta endorphin.

‘Ability to Blunt Pain’

“The higher the levels of beta endorphin in children’s blood, the lower their pain score,” Carr said. “It’s hard to avoid concluding that blood levels of beta endorphin provide an index of the children’s ability to blunt the pain they are going to feel.”

Having such a pain index could someday help physicians prescribe the correct amount of painkillers to ease the misery of burn treatment and other difficult therapy, especially in those who are young or cannot speak.

The researchers emphasize that they are at the very beginning of a quest to understand the body’s built-in pain-control system so that it can be monitored and manipulated to ease suffering.

However, at the heart of the work, said Szyfelbein, is this belief: “Pain is absolutely unnecessary.”