Knowledge is powerful — so powerful it might have saved Lenore Alexander’s 11-year-old daughter, Leah. But, tragically, the lessons came too late.
This week, we look at a Patient Voice Principle that falls under the category of “Compassionate Human Interactions:” a patient or care giver’s right to be informed of adverse events “in a timely way,” and be given “thorough, complete, open, honest, and necessary information” to help inform medical decisions. Lenore suffered the opposite, and her story speaks for itself.
Lenore’s Story: Leah was my middle daughter. The bridge that made my girls a pack. We noticed a small lump where her ribcage protruded when she was three. We went to the pediatrician, had X-rays, and were told to watch it. It didn’t appear to be a problem.
As she approached puberty, she became self-conscious of this still quite small bump. I took her to a doctor, thinking we would be told it was nothing, and I could help her stop worrying about it.
That wasn’t what happened. With very little explanation, the surgeon suggested I schedule surgery to correct this. I was told it was not a big deal. Leah asked repeatedly when she would be able to get back to Karate, and was told two weeks. I knew nothing of informed consent.
One Friday in December of 2002 I brought my healthy 11-year-old daughter to a top-rated hospital in Los Angeles. Thirty hours later, she was dead.
The surgeon said the procedure had gone well. The epidural was left in place to manage her postoperative pain. She was in considerable pain. The Fentanyl (opioid, a strong pain-killer) she was receiving was repeatedly increased.
Still in pain, she was becoming less alert. I asked repeatedly if something else could be going on. Each time I voiced a concern I was told the same thing, “she will be up and walking tomorrow.”
The medical staff seemed unconcerned. When the surgeon stopped in on his way to dinner Saturday evening, he told me I needed to get Leah up and out of bed. She could no longer hold her head up at this point. Ignoring my protests, he ordered her urinary catheter be removed. He said, cheerfully as he left, “I have to trump you on this.”
If he had felt her pulse, listened to her heart, examined her in any way, might he have noticed the respiratory depression that would soon take her life? Quite likely.
When Leah needed to get up to use the bathroom, it took three adults, including her father, to hold her up. She couldn’t keep her head up. We tried keeping her in the chair, but she was literally falling forward. Back in bed, she dozed off.
My husband left to go home to our other children.
Sometime around midnight Saturday, after being awake for almost two days, I fell asleep in the chair pulled next to Leah’s bed.
When I opened my eyes about two hours later, Leah was dead in bed, the medical term. Very dead. Had I stayed awake, could I have saved her?
The real question is why wasn’t my 80-pound child, who was receiving the maximum dose of Fentanyl allowed, on any monitors? Why hadn’t anybody checked her in the hours I was asleep?
Since that day I have searched for answers. None was given by the hospital.
At an autopsy, it was discovered, her epidural was not in the epidural cavity, but had been left in the intrapleural space of her left lung. That explained why she was not getting any pain relief. Yet nobody had thought to check the epidural.
I learned the hospital had just purchased a new computer system. Staff was told, use this system, or loose your privileges. Nobody really knew how to use it. So all the staff people responsible for my child’s care were not looking at her chart. They did not know how to pull it up, or the orders on the new computer.
Weeks after her death, 400 doctors met, and voted that they would not go back to work unless this system was pulled. I read this on the front page of the L.A. times. The system was pulled, and never came back.
Over the years, I have come to understand many people, many mistakes contributed to the death of my wonderful, amazing daughter. Yet, I am the only one of this group that takes any responsibility. It is a huge weight to live with.
And to understand how easily her death cold have been prevented, is inconceivable.
And still today, continuous monitoring of post-op patients on opioids is not mandatory.
The only thing I can do now, is work to make sure no other family ever goes through the nightmare my family has lived with.
And so, I talk to anyone who will listen, so my daughter Leah’s memory will be a blessing for another child.
Lenore says she was never given an apology or explanation for her daughter’s death from the hospital and doctors. She was forced to drop legal proceedings after more than three years due to the expenses she owed to her law firm and the $250,000 cap on medical malpractice damages in California. Lenore settled, and says her personal victory was not signing a confidentiality agreement. Now, she is fighting for “Leah’s Law” to make electronic monitoring mandatory for all patients on opioids, and telling her story though LeahsLegacy.org in hopes of preventing other families experiencing the “ perfect storm “ of mistakes and miscommunication that led to her daughter’s death. Unfortunately, Leah’s death was not the exception, since hundreds of thousands of hospital patients die each year from some type of preventable harm.
The takeaway for families: Be an informed patient. Find out who is performing any surgeries or treatment, and ask questions about how it will be monitored, and what they will be checking for. “You have to be educated and learn as much as you can,” says Lenore. “I just trusted them completely. I knew nothing. I could have saved her life and that’s really sad.”
