Why doctors must learn from a patient’s perspective

On September 14, 2006, I was in the midst of a 218-consecutive-day hospitalization. What began as a scheduled C-section that April, resulted in a massive infection that nearly killed me. By Autumn, I was receiving physical therapy in the large hospital gym when I was raced back up to my room for my trach to be suctioned. This was not an uncommon occurrence. I was used to the process, and while unpleasant, in the past I had always been able to gasp for air. This time was different though, as my airway was suddenly completely blocked. I couldn’t breathe at all! Sheer panic surged through me, as I heard the nurse call for the emergency response team. “We’ve got a patient coding.”

My nurse was incredible. She remained completely calm and kept reassuring me that I would be able to breathe soon. My eyes darted all around, in desperation and panic. Once again, I heard the emergency response team stampeding down the hall (a sound I had become all too familiar with). The team gathered around as my nurse worked with the suctioning device to try to unplug the mucus that had blocked my airway. For a moment, the plug was released, I could breathe, then, the suction device lost its grip and my airway was once again blocked. This went on for what seemed like forever. I kept thinking that this would be a terrible way to die. After all, I had been through, to choke to death on my own mucus would really suck. I was also repelled by the disgustingness of it all. I was no longer human. I was nothing but a machine that kept breaking down. The doctors and nurses were digging around with a suction device, as if I were a shoddy toilet with malfunctioned plumbing. That’s what I was, an old toilet that was ready for the dumpster. Finally, they successfully suctioned out the mucus plug, and I could breathe.

I collapsed in a heap of total despair and exhaustion. The doctor looked at me: “Lisa, we are going to need to send you back up to the ICU so that you can be more closely monitored.”

At that point, I knew enough to know that I did not want to go back to the ICU. I looked at the doctor straight in the eye and began to weep. Unable to talk, I mouthed to him, “Please, let me stay here, please, I don’t want to go back there.”

The doctor softened and said, “OK, I will allow you to stay on the regular floor. But we can’t have you keep coding like this. If you code again, you will have to go back to the ICU.”

He spoke to me like I was a child throwing food from my highchair on purpose; as if I was intentionally plugging up my trach with mucus! Yes, this whole thing is just a fun little game I made up. I love creating all this mucus so you can come running and vacuum it out of this lovely hole in my throat. This is more fun than a barrel of monkeys!

Then I began to worry.  Yikes, I hope it’s OK that I am not going back to the ICU, that seemed a little too easy, all I did was cry a little, and the doctor changed his mind? It was then that I began to realize my case was extremely peculiar. There were no black and white, definitive answers to my care. I lived in a land of various shades of ambiguity. Every decision that was made could take me on a wide variety of twisted roads, each with a completely different outcome. My doctors were not Gods; they could only make the best choices they could, because my case was unlike any other they had seen before. I was an enigma. The doctors were pioneers, traveling with me through this unchartered territory.

The scenario you just read, is simply a fleck of dust on a vast globe of patient experiences. During my long-term health battle, the above description was my norm. I was fortunate to have had a heroic medical team that reeled me back from the brink of death multiple times. It is due to their empathy and devotion to my case that I am alive today. Even with the outstanding care I received, I still encountered more than a few medical staff members who behaved callously and ebbed away at the tiny morsels of my dignity that remained.

Nobody is perfect, and everyone has their less-than-stellar moments in any profession. This is why it is critical that medical professionals receive continuing medical education in empathy training, patient-centered care, and patient harm prevention. Since my remarkable recovery a decade ago, I have dedicated my energy to propelling this cause forward. I travel the country, offering a patient’s perspective on health care and am often told by doctors that this is the first time this issue has been presented on since his/her ethics class in medical school.

With all the new patient-centered care buzzwords flying around, I am shocked to learn that this topic is still being marginalized. If we truly want to put patients in the center of care, we must learn from a patient’s perspective. As a life-long chronic patient, I embrace the digital advancements we’ve seen in medicine. Yet, all the technology in the world can’t make up for human empathy. Now more than ever, we must give credence to the patient’s voice.

Lisa Goodman Helfand is founder, Patient Perspective Consulting and the author of Does This Hospital Gown Come With Sequins?  She blogs at Comfortable in My Thick Skin.

Image credit: Shutterstock.com

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