My lesson of Patient Advocacy 101 was not taught in any school but rather in a hospital, and I paid a heavy tuition; it cost my Dad’s life.
In 2008, my Dad was referred to a facility to be weaned off BiPAP (commonly used for sleep apnea). On admission, he was stable and had no emergency. An allergy band was fastened to his wrist to warn about his life-threatening sulfa allergy that had been well documented in his medical records since 2004.
On the second day, the attending physician prescribed a medication called Diamox. Since my Dad spoke little English, I was his medical power of attorney and had been his advocate for years. I asked the doctor twice about the risks of this drug specific to my Dad. The doctor told me there were NO risks and he did not tell me that it was a sulfa drug. When we expressed concerns about the drug causing metabolic acidosis, the doctor got irritated and said, “I have been a pulmonologist for over 25 years and have treated many COPD patients with Diamox. You people need to stand back and let me do my job.” We were very intimidated by his abrupt mannerism, so we did not ask any further questions. This was a deadly mistake.
Diamox caused a cascade of irreversible harm, first ten episodes of diarrhea in two days and then worsened breathing due to a drug-induced acidosis. We were told this was all normal. Shortly after the fourth dose, my Dad complained of dizziness and headache as his blood pressure plummeted. To raise his life-threateningly low blood pressure, they pumped large amounts of IV fluids into my Dad in a short amount of time. This severely compromised my Dad’s heart condition. His whole body swelled up as a result of the induced edema, and his skin started to break down with large blisters and open bedsores. This was just the beginning. My Dad then suffered acute respiratory failure, acute heart failure, and acute renal injury. We were devastated, helplessly watching my Dad slipping away and not knowing what had caused his sudden, rapid down spiral. My father passed away a few days later. In contrast on admission, the hospital records showed that he was “alert,” “smiling,” “chatting with family,” and finishing 100% of hospital-provided meals.
Months later, we found out that the hospital pharmacist had warned the doctor that my Dad had a risk of a life threatening reaction from this drug. Without any emergency, the doctor went ahead and ordered to give the drug to my Dad, to monitored for a reaction, and to stop Diamox if the reaction occurred, however none of this was communicated to us at the time. We also learned that metabolic acidosis is a well-known side effect of Diamox and that Diamox can actually worsen CO2 retention and cause respiratory failure in COPD patients. For these reasons the off-label use of this drug as a respiratory stimulant is no longer recommended for severe COPD patients. The treating physician, who had never passed the board examination in his field of pulmonology, claimed that there are no negative effects of Diamox on severe COPD patients and at first he even denied that Diamox is a sulfonamide.
After my Dad’s death, I learned that he was not alone. Up to 440,000 patients die due to preventable medical errors, making this the third leading cause of death in the US.
To improve quality of care and to save more lives, I have become an avid patient safety advocate. Together with my husband Rex Johnson, we formed a local patient safety organization, Washington Advocates for Patient Safety, which is a part of the Consumers Union Patient Safety Network. As patient advocates, we go out into the communities to educate the public about medical care and medication safety, patient rights, patient empowerment, and infection prevention.
Because of our advocacy work, we have been invited to partner with the University of Washington School of Medicine to teach students about why patient-centered care, shared-decision making, and improving communication are essential to patient safety. In a close collaboration with the UW’s WWAMI Institute for Simulation in Healthcare (WISH), we share our personal stories and patient’s perspectives at the teaching of the AHRQ’s National Implementation of TeamSTEPPS Program at the University of Washington. Our goal is to encourage medical professionals to always include patients and families on their medical teams.
My experience of advocating for patients has taught me that awareness on patient safety must be taught to every stakeholder in health care, including patients and families, health care providers, policy makers, and medical equipment manufacturers. Only together, can we make a difference.