In loving memory of Katherine Eileen Hallisy
05/20/89 - 02/26/00
Author: Julia Hallisy, D.D.S.
Founder and President, The Empowered Patient Coalition
Open and honest discussion of medical errors and patient safety issues is never easy. When the patient who is harmed is a child battling a life-threatening cancer diagnosis, it becomes exponentially more difficult. In 1999 the groundbreaking Institute of Medicine (IOM) report “To Err is Human: Building a Safer Health System” validated what parents and family members already knew - that patients were experiencing a significant amount of harm when receiving medical care. The report’s recommendation to create a “culture of safety” has proved elusive and fifteen years later our health care system still struggles to prevent medical harm from reaching our most vulnerable patients.
In October of 1989 our second child, Kate, was diagnosed at five months of age with bilateral retinoblastoma which necessitated the removal of her right eye, radiation treatments, and two years of chemotherapy. The aggressive treatment seemed to be successful and for the next few years our interaction with the health care system involved follow-up visits, testing, and several reconstructive surgeries. In 1997, our world came to a screeching halt when Kate developed leg pain that was tentatively diagnosed as osteosarcoma. Children afflicted with retinoblastoma are particularly susceptible to developing bone cancers and Kate was rushed to our local medical center to confirm the presence of the potentially life-threatening tumor.
During a “routine” 30-minute biopsy procedure Kate was infected with Staph aureus in the operating room and two days later was rushed to the Pediatric Intensive Care Unit where she began to deteriorate rapidly. Within hours, her kidneys and lungs were failing, she required medication to maintain a blood pressure, and she was placed on a ventilator to breathe. Doctors told us that they didn’t expect her to make it through the night. In addition to coping with the horrors of dealing with metastatic cancer, we were engulfed by formidable and unforeseen enemies - medical error, hospital-acquired infection, and care that was fragmented and chaotic.
In our experience, both families and providers are especially impacted by harm that reaches a cancer patient. Providers know that the family lives with extraordinary stress and that an adverse event adds to their unimaginable burden. Health care teams may need to disclose and discuss errors in a more detailed and open manner due to the sophistication of parents of cancer patients. Children with cancer often have weakened immune systems and delayed healing that impedes their recovery from an error. Dealing with the aftermath of an error may delay the delivery of other life-saving treatments. The experience of a medical event often erodes the sacred trust and faith that the entire family has placed in their care team.
In our case, the doctors struggled to communicate honestly and effectively. They lacked the skills and the support they needed to help them discuss the surgical site infection and subsequent delay in diagnosis and then to move forward in a cooperative and transparent manner. My husband and I were not involved as partners to the detriment of my entire family’s physical and emotional health.
Looking back, there are many things I would have wanted to change about our ICU experience. Fourteen years after my daughter’s death, I work in patient safety and advocacy to share our hard-won knowledge with others. Here is what I want providers, hospitals, and health care leadership to know:
Parents provide important information. All parents are the experts on their own child. Parents of children with cancer often develop monitoring and assessment skills that are unparalleled and can often rival any lab test or MRI machine. We have an innate sense of when our child is in distress. Please listen to us.
We want and need to partner with our child’s providers. We respect the knowledge and input of providers and specialists but we also know that families have a vital role as well. We worry about our child’s safety if our knowledge and intuition is discounted. As much as we appreciate staff members who implore us to “get some rest and let us take care of your child” it isn’t usually what we want. We are used to being the primary caregivers at home and relinquishing that role in the hospital can make us feel diminished.
Acknowledge our expertise, skills, devotion – and our struggles. Please recognize the fact that we manage central lines, deliver medications, deal with nausea and pain, change bandages, and struggle to maintain our child’s appetite and weight. Aside from having to become experts on our child’s cancer treatment we may have marriages, jobs, and other children who desperately need our attention. We could be battling anxiety, insomnia, depression, and financial struggles. Simple statements such as “What you are going through is very difficult, but you are doing a great job” can be what give us the strength to stand and face another day.
Always be honest, truthful, and talk openly about errors. Families that have been devastated by a cancer diagnosis have already experienced significant trauma and a medical error may affect us even more profoundly than someone else. Hiding any part of the truth will inevitably lead to feelings of distrust and hostility. Even if our medical error is resolved in a positive way, remember that we leave the hospital facing our child’s continued suffering, disability, and mortality.
Make a commitment to partner with patients, families, and advocacy groups. Reach out to us as individuals and as formal advocacy groups to ask if we would like to share our experiences to help improve the system for those coming behind us. Establish patient councils and include patients on committees and your board. Commit to patient and family rounds and provide tools that allow families to truly participate and not just be asked if they have any questions. Invite us to give presentations to share our insight with your front line providers. Use patient education materials such as the ones offered by our non-profit, The Empowered Patient Coalition, to create a patient education center in your institution.
Even with the formidable challenges we faced, we will never forget the kindnesses we were shown by the care providers who went out of their way to offer verbal and emotional comfort. Health care providers have the great privilege and honor of impacting the lives of patients and families in profound ways during their darkest days. I imagine a system in which care teams work in partnership with patients and families in safe and supportive environments that allow them to focus on being the compassionate healers they are meant to be.