Yanling’s story hits on a number of the Patient Voice Principles, including the need for appropriate treatment and explanation of less invasive alternatives, continuity in care, the importance of shared decision making, and respect for independently gathered information and research done by patients and their families. Even the professionals can make a wrong decision, and in the case of Yanling’s father, the results can be devastating.

Yanling’s Story: On April 8, 2008, my Dad was referred to a facility to be weaned off continuous positive airway pressure (BiPAP). On the second day, the attending physician prescribed a sulfa medication called Diamox. As my Dad’s medical power of attorney and his advocate for years, I asked the doctor twice before the first dose about the drug risks specific to my Dad. The doctor told me there were NO risks and he mentioned nothing about sulfa despite the fact that my Dad was wearing two red wristbands to warn about his well-documented life-threatening sulfa allergy since 2004. 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.” Later we learned that he has never been certified in pulmonology.

Diamox caused a cascade of irreversible harm: first, two-days of diarrhea and then worsened breathing due to drug-induced acidosis. Shortly after the fourth dose, my Dad complained of dizziness and headache as his blood pressure plummeted. The hospital then pumped large amounts of IV fluids to raise his life-threatening hypotension. This severely compromised his heart condition. His whole body swelled up and he developed open bedsores. A few days later, my Dad suffered acute respiratory failure, acute heart failure, and acute renal injury. We were devastated and did not know what caused his sudden, rapid deterioration. My Dad passed away only two weeks after he was admitted. On admission, the records show he was stable, “alert,” “smiling,” “chatting with family,” and finishing 100% of the hospital-provided meals.

Later, we found out that Diamox is contraindicated for patients with severe sulfa allergy and COPD. We learned that metabolic acidosis is a significant side effect of Diamox and it can cause acute respiratory failure in COPD patients. For these reasons the off-label use of Diamox as a respiratory stimulant is not recommended for these patients.

Six months after my Dad’s death, we also found out that the hospital pharmacist had warned the doctor of a risk of anaphylaxis. Without an emergency, the doctor went ahead with the drug treatment and ordered that Diamox be stopped if anaphylaxis occurred. However, during the supposed monitoring, no one asked my Dad if he felt any symptoms; I was 24/7 at his bedside.

So, during my Dad’s last hospital stay, our family was totally excluded from making our own medical decisions and my Dad’s and our family’s goals and perspectives were never respected. CMS eventually cited the hospital for violations of my Dad’s patient rights and medical records.

After Dad passed away, my husband Rex and I formed a non-profit organization, WashingtonAdvocatesforPatientSafety.org, to advocate for patients’ rights and safety as well as medical board and healthcare transparency. We are also collaborating with the University of Washington medical school in training inter-professional teams on patient-centered care and shared decision making — a principle we take to our heart.

The takeaway for families: Sometimes, asking all the right questions can still lead to the wrong course of action. If you do your research and still feel unsure, ask for a second opinion. And a third, if need be. Be your own advocate for shared decision-making, even about seemingly routine health care decisions.

Have a story to tell? Take a look at the Patient Voice Principles and see which one best captures your experience. If you think your story will help others, email it to info@patientvoiceinstitute.org. Join the conversation and stay up to date with the Patient Voice Institute on Facebook and Twitter @patientvoices.