Our daughter Kate lost her life to an incurable cancer. Unfortunately, her journey was made even more challenging by life threatening hospital-acquired infection, misdiagnosis, and significant and permanent loss of lung function from septic shock.
We knew that we were facing a great battle with Kate’s malignancy but we never counted on the ravages of medical error, miscommunication, and medical care that was fragmented and chaotic. We promised Kate that we would finish the book we started together, so that others could learn from our experiences and hopefully avoid many of the adverse events we faced. The book took eight years to complete and it was the beginning of our patient safety efforts.
Kate’s Story: A Mother’s Fight Against Medical Negligence
At the heart of Dr. Julia Hallisy’s book, “The Empowered Patient,” lies the poignant story of her daughter, Kate. A tale of hope, resilience, and the dire consequences of medical oversight, Kate’s journey serves as a stark reminder of the importance of patient advocacy.
Kate’s battle began with a diagnosis of retinoblastoma, a rare form of eye cancer. While the family was aware of the potential recurrence of the cancer in the form of osteosarcoma, a bone tumor, they were unprepared for the complications that would arise from a routine biopsy procedure. During this seemingly straightforward procedure, Kate was infected with staph in the operating room, leading to life-threatening sepsis.
Sepsis is a rapid and deadly condition. In mere minutes, a patient can go from being responsive to critically ill. Despite the clear signs that something was amiss, the medical team was dismissive of Kate’s deteriorating condition. Dr. Hallisy and her family faced an uphill battle, trying to convince the doctors that Kate’s symptoms were not unrelated post-surgical effects but a severe infection. Their concerns were brushed aside, with one surgeon even questioning their insistence on reopening the surgical site.
However, when the surgical site was finally reopened, the grim reality became evident. Pus erupted from the wound, confirming the family’s worst fears. Kate had been battling a severe infection, which had been overlooked by her medical team.
The aftermath of this oversight was devastating. Kate was left with only 30% of her lung function and sustained permanent damage to her heart and kidneys. The trauma of sepsis was, in many ways, more challenging than the cancer diagnosis itself. While the family had worked collaboratively with healthcare providers to combat the cancer, they found themselves at odds with the very people meant to care for Kate during her sepsis ordeal.
Dr. Hallisy’s experience, as heart-wrenching as it is, became the catalyst for her advocacy work. She began documenting their journey, capturing the lessons learned along the way. When Kate inquired about her mother’s writings, Dr. Hallisy explained their purpose, leading Kate to suggest compiling them into a book to help others. This suggestion laid the foundation for “The Empowered Patient.”
Kate’s story underscores the importance of patient advocacy and the need for transparency and collaboration in healthcare. Through Dr. Hallisy’s work, she hopes that other families can benefit from their experiences, ensuring that no one else has to endure the pain and suffering that Kate did.
In the face of adversity, Dr. Julia Hallisy stands as a testament to the power of a mother’s love and the importance of patient empowerment. Her story serves as a call to action, urging us all to be vigilant advocates for ourselves and our loved ones in the healthcare system.