Death by HMO: The Jennifer Gigliello Story

Townsend Letter for Doctors and Patients,  Feb, 2001  by Kismet Oz

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Perhaps there is no greater regret than when you choose one direction over another, then at the end of a long and difficult journey you realize that you have made the wrong choice and have paid the ultimate price. This is what happened to Jennifer Gigliello and her family, who relied on a medical system that was supposed to deliver appropriate care and have the right answers, but did not.

Death by HMO: The Jennifer Gigliello Story, written by Jennifer's mother, Dorothy Cancilla, provides important lessons for all who read it. Unfortunately, this family tragedy could happen to any of us or to our loved ones.

Jennifer was only 22 years old when she began to experience severe pain in her abdomen during her pregnancy. After the birth of her son, the pain returned. Jennifer's family consulted a specialist who believed that her gallbladder was causing her pain. He recommended surgery to have her gallbladder removed. The family sought a second opinion. This doctor, recommended by a family friend, concluded that Jennifer's pancreas was the source of her pain. Eventually, however, the family came to regret trusting in this second doctor's diagnosis. He was responsible for setting in motion an odyssey of endless hospital stays, emergency room visits, and dangerous surgeries that would plague the entire family for the following eight years.

The Cancillas have been and remain a very close family. They all suffered as Jennifer experienced excruciating pain and went through various medical procedures. The family marveled at her will to lead as normal a life as possible during her brief "vacations" from illness. Her spirit and yearning for a full life gave the family strength.

Jennifer eventually gained medical insurance coverage under one of the largest HMO providers, Kaiser Foundation Health Plan of Northern California. Severe pain caused Jennifer to become increasingly dependent upon painkillers. Throughout her ordeal, doctors and the hospital staff involved with her care never grasped her extreme suffering. They persisted in treating only her symptoms rather than exhausting all measures to find the underlying cause of her illness. Part of treating her symptoms involved providing high doses of painkillers. Ironically, as her illness progressed, medical staff admonished Jennifer for her dependency on drugs and treated her with disdain because of it. Jennifer's illness led to frequent hospitalizations and complications, including severe malnourishment. After further surgeries, she became an insulin-dependent diabetic. With a severely damaged digestive system and malnourishment, Jennifer's illness became increasingly difficult to manage. To try to remedy her medical condition, a h ighly specialized "Hickman" catheter was inserted. This treatment required special attention because of high risk of infection. Jennifer received instruction on how to clean and operate the catheter apparatus. Unfortunately, the medical staff supervising her care failed to follow the oversight procedures for patients with this type of treatment. She suffered frequent episodes of infection.

Jennifer's family was disturbed to notice that the hospital staff treating her had no training for the catheter on which she relied for nourishment. The family thought it was ludicrous that the staff in charge of treating her asked Jennifer to come to the hospital when she felt better and train them on the cleaning and operation of the "Hickman" catheter. Although proper procedures were established for the maintenance of the catheter, the staff at Kaiser never received the training. The most vital part of that training would be to readily recognize signs of infection.

As Jennifer's hospital visits became commonplace so did the attitude of those in the emergency room. When her regular doctor was unavailable, her treatment was inconsistent and often lacked even the most basic aspects of proper care. The family concluded that the HMO viewed Jennifer's illness as "not cost effective" therefore, treating her was inconsistent with a healthy bottom line.

During the last year of her life, Jennifer was admitted to the hospital countless times. She experienced fevers, delirium, and weakness. She had developed a severe infection from the catheter, which had advanced to a gravely serious level. Various doctors and nurses at Kaiser failed to recognize the infection, despite knowing that a catheter patient with a fever should be assumed to have a catheter infection. With all of Jennifer's medical records available, including her long history of catheter problems, Kaiser personnel should have been able to diagnose and treat the infection. Yet they decided against replacing the catheter immediately because doing so would have cost Kaiser about $10,000. Evidently, the staff tried to delay replacing the catheter to save money.

Jennifer's doctor at Kaiser had been out of town during the critical time when her serious symptoms were overlooked. Later, he told her husband some shocking revelations. He said, "I had been worried that Jenny would not get the proper care while I was gone.... No one at Kaiser wants to treat her because she is so sick." He explained that he had ordered Jennifer's medicines in advance because, "No one wanted to treat her unless they had to." This is the same doctor who shunned the family after Jennifer died and refused to keep his promise to discuss her autopsy report with them. He is the same doctor who, rather than offering condolences to the family at Jennifer's deathbed, ignored the family and went to fill out the "paperwork."