It’s different when you lose a patient in private practice. In the ICU, you expect to lose patients. They arrive close to death. In the ICU, you usually haven’t known the patient for 15 years. Even if you have, you’ve expected the worse. In the ICU, death is always an option. In the ICU when a child dies, it’s not the family you’ve cared for through colic and toddlerhood and their 7th grade dance. In private practice, when you lose a patient, you have an even deeper need for an explanation.
When Xavier (name changed for privacy) died, it was different than when kids died in the ICU. I needed an explanation. I wanted to understand everything about the 15 years of Xavier’s life. So now I know. Xavier died because his dad lost his job. When Xavier’s dad was unemployed, his family went uninsured. When they lost their health coverage, seeing the kidney and urology specialist was the least of their concerns.
Xavier was healthy. He was sweet and wonderful and he loved his parents. He was a good kid, and they were a nice family. He had lots of normal yearly checkups. Every now and then, Xavier got urine infections. That’s unusual. Every time he got a urine infection, Xavier’s parents were asked to take him to a specialist. But he was healthy so they didn’t bother.
About three years ago Xavier went to the Emergency Room with fever and back pain. He was diagnosed with a kidney infection and asked to follow up with a urologist. When he came back to the office, our office manager actually called the Johns Hopkins pediatric urologist and set up an appointment for Xavier. She even got them directions, wrote down all the information and made copies and placed one in the chart and gave one to the family. They still didn’t go to the specialist.
Shortly after the ER visit and the missed urology appointment, Xavier’s dad lost his job. With his job, he lost his health insurance. Xavier didn’t come in for physicals or even for sick visits during that time. Then one afternoon my office manager got a call from Xavier’s mom. She said they finally got state health insurance, Medicaid, and did we accept that insurance?
Yes, my manager told Xavier’s mom, of course we do. It just so happened Xavier wasn’t feeling well, so they wanted to bring him in. Come on in, my manager told them.
Xavier walked in to the office pale, sweaty, and short of breath. His hemoglobin was 7, creatinine 12, potassium 6, WBC’s and platelets were normal. He was 15 years old, not an inch over 5’4”, and not a pound under 250 lbs.
He went to the Johns Hopkins pediatric ER, and was admitted to the ICU. Over the weekend he deteriorated. He was intubated, and dialysed. When his primary care doctor got to the ICU the next morning, (just visiting) she was asked to wait outside-- “We’re working on him,” they explained. Shortly thereafter, she saw the family rushing down the hall. Everyone was shouting. Xavier was dead. He had suffered a ruptured abdominal aortic aneurysm. The walls of the largest blood vessel in his body separated and ruptured in Xavier’s belly, and he bled to death. First slowly, and then suddenly
Right. Xavier probably was born with posterior urethral valves, leading to chronic kidney infections, which caused the chronic renal failure, which in turn caused the anemia. Obesity was a separate, more recent, issue that likely exacerbated the hypertension caused by the renal failure. Which in turn caused the aneurysm. Eventually, his body couldn’t take it anymore.
What really killed Xavier was his loss of health insurance. In the past three years, Xavier got no medical attention. His parents were unemployed and struggling. They saw no reason to seek medical care and had no time to worry about it- they were dealing with keeping a roof over their head and food on the table. They saw no need for yearly physicals and they saw no doctors. Maybe they even knew that Xavier needed to see a urologist and nephrologist but they worried that the tests and medicines and dialysis would bankrupt them.
I never met Xavier. But I combed every page of his medical record. I looked at all the details, and for all the world, it looks to me like lack of health insurance, poor access, lack of education, and seemingly unaffordable care, killed Xavier.
With uninterrupted access, Xavier’s problems would have been noticed. His annual blood tests would have shown the worsening anemia, the worsening kidney function, the climbing weight. If care were more affordable in this country, Xavier’s parents would have been more likely to see the specialists. With better coordination of care, someone somewhere would have gotten him in to the doctor before he weighed 250 lbs, with failing kidneys and a balloon filled with 2 liters of blood about to burst in his abdomen. With better access, affordability, and quality of health care, we could have saved Xavier’s life. Eventually, someone would have done something.
Eventually, we, the richest nation in the world, will stop letting our children die for lack of access to medical care.