The United in Safety theme for this year's Patient Safety Awareness Week campaign highlights the need for all stakeholders to work together to improve patient safety. Our focus is on patient and family engagement and the importance of the relationship between them and their health care providers.
Enhanced communication begins with an informed and engaged patient and helps to lead to safer care. During Patient Safety Awareness Week 2015, we will be sharing a few patient narratives that illustrate the importance of communication, assessing patients' values and goals, and working with patients as partners.
Kimberly Jewett's Story
It was Memorial Day weekend 2008. I’ll never forget the day. I was visiting with my mom, who was recovering from her battle with brain cancer. I told her I was having some achiness in my left breast that was abnormal for me. My mom asked if I could be pregnant, and if not, to give myself a breast exam. Upon doing so, I immediately felt a lump under my left armpit.
After meeting with my OB-GYN, I heard those dreaded words, at the young age of 31, “you have cancer.” I remember thinking how was this possible, I was the caregiver to mom, and I had two young children ages 6 and 4. Would I be here to raise them?
When my doctor gave me the news, he also told me that my tumor was “ER/PgR-positive, HER2-negative.” These words were like a foreign language to me--I didn’t know what they meant or how they would affect my treatment.
I asked for my pathology report, because I wanted to better understand my diagnosis. Having the pathology report was essential. It allowed me to feel more empowered and engaged. I decided to go to the Internet and research to learn more about the information in my pathology report and how this information would help guide my treatment.
My advice to other patients who have been recently diagnosed with an illness, such as cancer, is to ask for a copy of your pathology report. Turn to credible and accurate resources, such as those available through the College of American Pathologists, to help you better understand your report so that you can ask the appropriate questions of your oncologist, pathologist, and surgeon to make the best treatment decisions possible.
My cancer came back in January 2012. Having the knowledge to understand my pathology report allowed me to keep fighting and to again make informed decisions about my health and treatment based on the details of the report.
Today, I feel great! Cancer has changed my life in a big way. It has allowed me to not take things for granted and to spend valuable time with the people that I love. And, most of all, it brings me such joy to know that I’m here to watch my kids grow.
View a video of Kimberly's story, courtesy of the College of American Pathologists.
Terry’s Story, Oregon
I was misdiagnosed with pneumonia when I had congestive heart failure. I became very congested in the spring of 1997 and saw our long-time family physician a few times about it. I remember there was a visit when a medical student was shadowing my doctor. He was listening to my heart, began to look concerned, and turned around to say something, but my doctor waved him off. Looking back, I wish I’d paid more attention to this. I just knew in my gut that he’d picked up on something.
A few weeks later, I went in for a previously scheduled minor (unrelated) surgery. I kept telling everyone that I was having trouble breathing, but no one seemed to care. When I woke up after the surgery, I couldn’t breathe and was placed on oxygen. At this time, I was correctly diagnosed with congestive heart failure which, when caught early, can often be effectively managed with medication and lifestyle changes. I left the hospital in a wheelchair and my health declined precipitously in the following months. I was placed on a donor list for a new heart that fall and received a transplant the following year. Writing this nearly 18 years later, I am fortunate that my story had a positive outcome, but I still wish I’d listened to my gut in the first place, and perhaps been able to avoid all of this.
Alice's Story, New York
My mother, Alice Brennan, a vibrant, independent, and energetic 88-year-old, was looking forward to dancing at her upcoming high school reunion.
In July 2009 she was admitted to the hospital for pain and swelling in her right leg, later diagnosed as gout. From the hospital, she went to a rehabilitation center because she was having difficulty walking.
After being placed on muscle relaxants and other medications, my mother began to suffer severe side effects including hallucinations, paranoia, incontinence, and loss of appetite leading to severe dehydration. She was readmitted to the hospital and diagnosed with MRSA and a urinary tract infection.
Severely disoriented, Alice fell and injured her back. Doctors placed her on Haldol for her ongoing psychosis, before a geriatrician finally assessed her and determined that her symptoms were probably all caused by the medications. Alice was removed from the medications, but it was too late. She had lost 24 pounds in 11 days and was suffering from four separate hospital-acquired infections--Clostridium difficile, MRSA, Vancomycin-resistant enterococci (VRE), and a urinary tract infection.
Alice was discharged to hospice and succumbed to the ravages of polypharmacy and healthcare-acquired infection 48 days after initial hospitalization.
--Told by Mary Brennan-Taylor
Vera's Story, New Jersey
My mother, Vera Eliscu, was an alert, active, highly intellectual retired classical dancer and businesswoman. In January 2009, at the age of 90, she was admitted to the hospital for treatment of a foot ulcer and cellulitis. An MRI showed the bone in her foot was unaffected.
After five days in the hospital, Mom was released to a long-term care facility with a two-week antibiotic prescription and instructions to stay off her foot. Within eight days at the long-term care facility she had contracted the intestinal infection Clostridium difficile and developed pneumonia in the bottom of her left lung. She was readmitted to the hospital. While an aide was feeding her the first night in the hospital, she aspirated food into her lungs. She developed double pneumonia and was sent to the ICU, where she was intubated and put on a ventilator. In the ICU she was extubated twice but her course was uneven and after a week it was determined that she needed a tracheotomy, PICC line, and feeding tube. She received a size 7 tracheotomy tube.
After 10 days in ICU, Mom was transferred to a step-down unit and then a long-term acute care facility for vent-weaning and physical therapy. She did very well weaning and was getting out of bed and ready to walk again. We spent hours together in her room reading from her precious art books and discussing the state of the world. We looked forward eagerly to Mom coming home.
Eleven days after Mom entered the long-term acute care facility, her tracheotomy tube was changed to a size 4, a very small tube that is difficult to suction. The tracheotomy tube slipped out unnoticed the next day as the nurses were turning her, leaving her without oxygen for 5 to15 minutes. Oxygen was not given promptly or correctly, and Mom was in and out of a coma. She was visibly in pain and unable to speak or move. I could see the pain and fear in her eyes, but she never spoke again.
Within three weeks of the tracheotomy tube event, Mom had developed a 13-cm stage 4 bedsore. The long-term acute care facility did not offer a wound vacuum, because they did not have one, and they did no physical therapy to prevent bedsores. Mom became malnourished, was overloaded with fluids, contracted Clostridium difficile, and developed a urinary tract infection. Eventually, she was transferred to a different long-term acute care facility where she received excellent care, but it was too late. Mom passed away in August 2009, six months after her anoxic brain injury and eight months after being admitted to the hospital for a foot ulcer.
--Told by Veronica James