Patients have humbled and inspired me for decades. There’s a story that I have told few people, but more than 25 years ago, my daughter had a serious health crisis that shook my world. After taking 3 months off trying to find a way forward for her and our family, on my first day back, I spent the one-hour drive into the medical center sobbing. I pulled myself together enough to trudge into the wound center, and the first patient I saw was a man paralyzed from the neck down, lying on a gurney in the hallway (because that’s the only place we had to put a patient on a gurney). He was being treated at the wound center for serious pressure ulcers. He greeted me with a smile and said, “Hi Dr. Fife, isn’t it a beautiful day today? By the way, would you scratch my nose?”
I stopped in my tracks. It was as if God had spoken directly to me. This man was not able to scratch his nose, and he had a spirit of thankfulness. At that moment I vowed to stop feeling sorry for myself, remember all I had to be thankful for, and get back to work. That patient will never know the impact he had on my life. Eventually I came up with the idea of giving an unofficial “undaunted spirit” award to the patients who most inspired me, or sometimes, just made me laugh (you can see some of those stories in links below).
Patient stories can help improve medical care in several different ways because they can:
- Inspire us with stories of every-day heroes who do not let chronic ulcers and related diseases define them
- Identify knowledge gaps (e.g., poor identification of “rare” diseases like pyoderma gangrenosum or lymphedema, gaps in treatment options, etc.)
- Identify problems in payment policy (e.g., prior authorization challenges, Medicare Advantage problems, etc.)
- Identify gaps in the delivery of care (e.g., how documentation errors prevent access to dressings, bad attitudes on our part, failure to manage pain, etc.)
- Identify opportunities to improve all of the above
Here is a page with links to patient stories I have posted over the years. If you are a patient with a story to tell, send me a message. You can remain anonymous – but your story should be told. If you are a clinician, feel free to tell the story of one of your patients – no PHI please. I can keep your identity anonymous, too, if you prefer. Eventually, we will figure out how to use these stories to improve the art and practice of chronic ulcer treatment, as well as the regulatory and payment policies that impact patients. We might even improve the way we do clinical research to find what works. I would like to approach a focus on the patient in an organized way, but since I am not known for being organized, right now, I am just going to solicit more patient stories.
Dr. Fife is a world renowned wound care physician dedicated to improving patient outcomes through quality driven care. Please visit my blog at CarolineFifeMD.com and my Youtube channel at https://www.youtube.com/c/carolinefifemd/videos
The opinions, comments, and content expressed or implied in my statements are solely my own and do not necessarily reflect the position or views of Intellicure or any of the boards on which I serve.
Good morning, Dr. Fife:
I had an 18-yo male patient, whom I jokingly told him, was my only patient that got naked for me to see every time he had a wound clinic appointment. His entire back, buttocks, posterior thighs and calves were covered with full-thickness inflammatory ulcers. I had diagnosed him with drug-related inflammatory ulcers, which all my colleagues called pyoderma gangrenosum. After explaining that, in my humble opinion, pyoderma gangrenosum is a “catch all” term applied to many different kinds of atypical wounds, I developed a trusting relationship with both the patient and his mother. Mom lived her life in constant terror, every time her cell phone rang, thinking it was a call that her son had died from a drug overdose. As part of the work-up to determine the underlying causes for his impressive non-healing wounds, his treatment plan included a thorough autoimmune, as well as infectious work-up. His workup revealed he had untreated Hepatitis C; and he also was shooting up heroin. This patient’s treatment plan included a referral to infectious disease for Hepatitis C treatment, as well as a referral to a psychiatrist to evaluate and manage his untreated anxiety and depression. Employing a treatment plan based upon evidence-based wound care interventions, provided in a non-judgmental manner, this young man’s wounds eventually healed. For nearly six months, our wound clinic team continued to see this patient laying naked on his belly–up to and including–his last patient encounter, when his wounds were healed.
Approximately 9 months later, we received two unexpected visitors in our wound clinic. The Mom and the young man. After relaying none of us recognized him, with all his clothes on, we delved into how his overall health was, and what progress he had made in his life. He was working as a manager in an animal shelter, and had adopted a dog whom he loved more than any animal he had ever owned. There were many tears in our wound clinic that day, including our young male patient.
It reminded all of us in the clinic that our unconditional love, acceptance, hope, and passion healed not only this young man’s atypical inflammatory wounds, we were able to heal the spirit beneath the skin. Many times that day my team reminded me of something said on a daily basis in our wound clinic: The skin is the messenger. As wound care providers, we need to hear the message and respond accordingly.