It is hard to believe that in the mid 1980s it was standard care, even in many academic health centres, for infants to have open heart surgery with no anaesthesia but just a drug to keep the infant still.
This practice was blown out of the water by a courageous mother, Jill Lawson, who against great resistance, pushed to publicize the lack of anaesthesia during open heart surgery that her son, Jeffrey Lawson, had undergone at DC children’s hospital. After dozens of letters and requests for a review of the policy and many condescending rebuffs, the Washington Post published her story. All hell broke loose. There were dozens of news stories because every mother knew that babies feel pain. How could health professionals be so stupid?
Careful research by Dr. Kanwaljeet J. S. Anand on the same procedure for his Rhodes scholarship at Oxford had demonstrated the under medication of children following surgery and the massive stress response that infants experience when undergoing surgery without anesthesia. Anand was feted and given a prize by the British Paediatric Society. But his research was also attacked by a group of British MPs because they claimed he was experimentally torturing babies.
Over the last 30 years, there has been a huge increase in research in paediatric pain. There are some real advances in practice. Health centre accreditation standards now require recording and treatment of pain and some children’s hospitals in the USA have used their pain management as a selling feature. So, one would think that after 30 years of advances in the science of pediatric pain there would be many fewer problems with poorly or completely unmanaged pain. But it is still the case that babies are circumcised with no analgesia; sick neonates are often given 25-30 painful procedures a day without any analgesia; although 5% of children and youth have chronic pain and significant disability, at least 90% of them never get help from a chronic pain specialist; many young patients are told that their pain is “all in your head”; there are only a dozen developmental neuroscientists in the world studying pain in children; in most hospitals about 30% of the children suffer significant unrelieved pain; and many children are still terrified of needles because of poor management of pain.
So why is pain in children and youth ignored? Is it because children can’t speak out for themselves and when they cry it is dismissed because “Children always cry”? Because children as a group are not valued? Does it go unchallenged by parents because those parents believe that the doctors would of course relieve the pain if they could? Or is it the case that advocates for children’s pain have simply not been effective? Or is pain just dismissed as “a symptom”, or is seen as unimportant by health providers?
I don’t know why. Perhaps pediatric pain advocates (and most scientists in this area are advocates too) are not aggressive enough. But the science is there. Pain in children is felt, has significant short and long term consequences and there are effective ways of treating it. But will it take 30 more years for adequate pain management be the norm?