The Death of Ethan: A Life of Chronic Pain Ends in Tragedy
Parents recall how their son became dependent on opioids and other medication
She holds in her hands the autopsy report of her 19-year-old son, a young man with dreams to “do something big in this world.”
Tracy Jensen often thinks about her son, Ethan. He was someone with an amazing aptitude for learning. “He was a boy who had eyes to notice others who, like him, were in pain and suffered silently, Tracy said. “He was a boy who had the heart to care.”
Ethan never stopped caring about life. It was just the pain became too frequent and too painful for him. Ethan suffered from muscle pain in his back and right leg. At 5 months old he had a fatty tumor removed from his spine. His spinal cord was unable to be untethered and the scar tissue that remained was also troublesome.
Tracy and her husband, Eric, wonder when their son’s suffering began. Was it before his birth? Was it at 5 months old when he had the surgery? Was it later as scar tissue tangled the cord?
As they became aware of their son’s pain, they tried to help but they weren’t sure how, other than with over-the-counter medications, massage therapies and hugs.
Ethan didn’t really know how to help his pain and neither did most adults in his life. When he asked for medication or begged to lie down or go home, his requests were typically met with scoldings for him at school. Most didn’t understand how such a usually active child could truly be suffering.
Over time, Ethan learned to mask his pain.
“A child in chronic pain who is continually misunderstood is going to have emotional struggles such as depression,” Tracy said. “It is not reasonable to expect a child to know how to understand these issues, and my son was no exception. He struggled to process the facts of his life and this caused him to be more and more frustrated.”
Before he entered middle school, Tracy found a book on healing a child’s chronic pain. She continued to research and found that Cook Children’s offered a pain management program. It was there that the family met Artee Gandhi, M.D., medical director of pain management.
“Dr. Gandhi and company were incredibly responsive and devoted to Ethan's needs,” Eric said. “He was enamored with her in particular because she took his interests seriously and treated him as a young man rather than a child. However, Ethan was not always honest with her about the severity of pain he was experiencing. He sometimes believed that the doctors would not believe him or that they would think he was exaggerating his pain level to get medications.”
All through high school and beyond, Ethan studied science online. He taught himself subjects such as organic chemistry, DNA and gene therapy, and pharmacology. He learned how drugs, and different doses, acted and interacted in the body. He thought he understood enough to be safe with whatever he used for pain. He thought he was in control of his pain as he learned to manage it himself. He bought over-the-counter meds and used them off-label. He found ways to obtain prescription pain medication without a prescription.
The pain management team knew Ethan's level of self- education made him a challenge. Dr. Gandhi warned him about self-medicating and the dangers. Unfortunately, like many in their late teens, Ethan believed he was indestructible.
Ethan never stopped coming to clinic, but as time progressed he began to cancel and reschedule appointments more frequently. His parents believe that by mid-2015, Ethan thought surgery was his only chance for relief. The surgeons were able to straighten a significant portion of his lower spine regarding the pain, and as he was tapered off of his pain medication he began to once again self-medicate.
Eventually, drugs, especially opioids, were the only things that made him feel better. It was only slightly better, but that was OK for him, at least for a while. After the realization that his surgery failed to entirely alleviate his pain, Ethan became increasingly afraid of how his pain would continue to impact his life. He was afraid of what others would say, or what they thought of him. He believed no one would understand. He ultimately decided that he would have to treat his pain himself.
According to the Medical Examiner, Ethan died of mixed drug toxicity.
“We are only now looking back and asking ourselves if we could've done much better,” Eric said. “That day, my son was freed from his pain, but our pain would just be beginning.”
“We need to be much more vigilant on how we treat kids’ pain and how we create centers that address that pain,” Dr. Gandhi says. “If you look in Fort Worth or Tarrant County, there are probably 60 adult pain centers in this area, but for kids there are 35 in the entire country. That’s a huge difference. That perspective is crazy.”
Opioid abuse has become an epidemic not only for adults, but also for children. Artee Gandhi, M.D., medical director of Cook Children’s Pain Management Program, says that health care has neglected the prevalence of pediatric pain and has not placed focus on the importance of treating our youth with mind-body therapies, rather than medications. "When we prescribe narcotics we need to do so for the right reason, the right amount of time, the right dose and the right amount," Gandhi said.
Recent studies show that the use of prescription opioids doubled for adolescents, 15 to 19 years of age, between 1994 and 2007. The Centers for Disease Control and Prevention (CDC) reports that nearly 2 million Americans 12 years of age or older either abused or were dependent on opioid painkillers in 2013.
In one study of illicit drug use among teens, opioids accounted for 100 percent of the deaths.
“These are kids that were prescribed opioids for some reason, most of the time for some pain-related condition by dentists, emergency room doctors or primary care physicians,” Dr. Gandhi says. “These kids are going back and taking these medications at a later time. They are using these left overs for non-medical use. We now know that the risk of death from overdose has increased. We also know that the use of opioid prescriptions leads to a higher incidence of anxiety and depression. Interestingly enough, even those kids that are given opioids for a legitimate reason will tend to misuse and abuse drugs.”
The Pain Management Program at Cook Children’s treats kids with pain ranging from fibromyalgia to migraine headaches to end-of-life patients to kids with life-limiting conditions such as neuromuscular disorders, and pain related diseases such as arthritis, cerebral palsy, etc.
The specially trained physicians at Cook Children’s create a treatment plan that is focused on each particular child and opioids aren’t often the first or only pain medicine used to treat children.
“The danger comes when physicians think the only way they can treat pain is through a narcotic and that’s not the case,” Dr. Gandhi says. We need to know what type of pain the patient is having and take into account the child’s experience of pain. We are all individuals and no two people react the same way."
Dr. Gandhi says that between 15 to 20 percent of the kids seen at her clinic are on chronic opioids, but they are kids that have life-limiting medical conditions or end- of-life conditions.
The other 80 percent of the pain management patients work with physical and occupational therapists and receive therapies such as massage, biofeedback, cognitive behavioral therapy and acupuncture. Music, art and animal assisted therapies are also available for children. They look at all factors that contribute to the pain experience such as diet, nutrition, sleep habits, stress management and coping mechanisms. They create an environment of integrative health where practitioners and patients work together.
About the source
Artee Gandhi, M.D., is a pediatric pain management specialist and anesthesiologist. She has trained across the country including residency at the University of Missouri and fellowship at Stanford Univeristy. Cook Children's Pain Management program cares for infants, children and adolescents with chronic and acute pain. Cook Children's is one of a few children's hospitals in the U.S. providing a comprehensive pediatric pain management program.
About Pain Management
The Cook Children's Pain Management program uses a team approach in caring for infants, children and adolescents with chronic and acute pain. Cook Children's is one of a few children's hospitals in the United States providing a pediatric pain management program.
Our team includes a board certified anesthesiologist trained in pain management, a licensed clinical social worker specializing in psychophysiology, a dedicated physical therapist and pain management nurse coordinator.
Because of our team approach, patients will see their physician, physical therapist and psychophysiologist in one visit.
Patients can make an appointment and physicians may refer a patient by calling our offices at: 682-885-PAIN (7246). Physicians, please download our referral form here. New patients, for your convenience, please have your insurance information ready when you call.