Tuesday, April 20, 2010

Little Patient in a Big Medical World

It was one of my first opportunities to talk to healthcare professionals. It was Medical Grand Rounds at a major hospital. I had been invited with a chaplain friend via an official letter. We had to submit our CV for approval. (First, I had to look up "CV" on google because I didn't know what that was.) This was a big deal and I felt important, nervous, intimidated.

I prepared my remarks for the upcoming talk carefully. I was ready to talk about life as a patient and the importance of my relationship with my healthcare providers. I was ready to talk about grief and coming to the end of life. I was confident in my content.

My chaplain friend, Heidi, and I had been invited to a Residents' Lunch prior to the Grand Rounds. This is where we would meet face to face with the resident who had invited us to speak. We would also have an hour to chat with the internal medicine residents about whatever was on their minds.

When we sat at the head of the table, there were about 15 pairs of eyes on us. The Chief Resident, the man who invited us there, stood for introductions. He began with Heidi. Her introduction was long, detailed, and glowing. He went all the way back to her high school and undergraduate days, detailing her degrees and hobbies. He gave a lengthy description of her work within the hospital and what value she lends. It was an impressive and generous introduction, clearly showing he had done his "homework."

When it came time for my introduction, he gestured at me and said "And this is Tiffany Christensen." With that, he sat down. I was stunned and a bit stung. He had my CV information and he knew my patient background. This was not a case of not knowing, it was a case of not caring. I felt like a lump of meat.

Through the rest of the lunch, all questions were directed at Heidi. I did my best to put on a smile, shrug off what had just transpired, and participate in the conversation. Each time I chimed in, however, my comments were met with dead air or another remark directed at Heidi.

When it was time to present at Grand Rounds, it was difficult to keep my head up when I walked into the auditorium. My competitive spirit is all that kept me going. I had an even stronger drive to show professionals the value of the patient voice.

When Heidi and I finished our presentations, all of the comments and questions were directed at me. One older physician remarked that he usually fell asleep during grand rounds and this was the first one in a long time that kept him on the edge of his seat. I was later met with many wonderful comments in private. Grand Rounds had been a success. I had weathered the storm of one professional's bias and proven to myself that my voice, my experience, did have some relevance to practicing professionals.

Today, I make my living speaking to consumers and professionals about various aspects of healthcare. Every time I stand before a group of healthcare professionals, I am met with the same insecurities I felt that day at Grand Rounds. My lack of medical training, my lack of a degree of any kind, comes up on a fairly regular basis. I dread the pre-presentation chats because invariably someone will ask my background and I am met with the same look in the eye as that chief resident. It can be a painful time before I make my presentation because my value is under scrutiny.

I am just a little patient in a big medical world. Trying to be heard. Trying to speak up for what I see on a personal and systematic level. I am just a little patient looking up at the towering healthcare system and hoping to make a dent. Each and every time I stand in front of a room of doctors, nurses and other healthcare providers, I wonder if I will win them over or fall flat on my face. Usually I win them over. Sometimes, I fall.

There are lots of us. Patients with rich insights stemming from arduous experiences. We have so much to say and so much to teach. There are still professionals who resist us. There are many who look for ways to integrate our messages into their practice. There is a new movement called Participatory Medicine. Some of us, patients and professionals, are ready to partner and meet each other as equals.

While I have to battle my nerves and insecurities in my work, professionals may face other challenges. I recently gave a presentation beside a physician currently leading the way in Participatory Medicine. An audience member asked what he would say to one of his colleagues who resisted the idea of partnering with patients. His response impressed me.

He said, "Every day I go to work, I have to battle my own ego. I know things would happen faster if we did them my way. I could plan my schedule if I didn't have to take other opinions into account. But I have made a choice to practice a different way. I have to remind myself that this is not about me, my schedule, my way. This is about the patient. So every day, I choose to put aside my ego and listen."

We are getting there. This healthcare culture is changing. Patients and professionals are working through their respected challenges and finding a way to the middle. I am so grateful to be a part of this exciting time in the evolution and revolution of healthcare!


6 comments:

Mary ElizaBeth Peters said...

cool to look at the beginning of "it all" for you!

Hayzell said...

This really makes me hopeful! I think the more we have doctors and patients working together, the faster we'll see real change in the way medicine is practiced and services are rendered. I also think it may bring more of a holistic approach to care. I recently wrote about doctors and empathy and how important it is (see http://www.possibilism.org/your-doctors-empathy-effects-pain-treatment/ ) and clearly, you met some docs that seem to really care and get it. So glad you're out there spreading awareness! Thank you, thank you, thank you!

cfjourney said...

wow - love your story!

Denise Fahr said...

Tiffany,
You are def not "just a little patient"!! You are the speaker for so many people that do not know how to express their frustration with the way healtcare professionals work (or not) with their patients. Regardless of a degree or not having a formal version of medical training (which I don't have either), you still have a voice and I am so glad that you use it.
I am in the process of reading your book and find it very interesting.
My husband has Cystic Fibrosis and he was listed with the University of Penn on 3/9/10. Thank you for your effort in making things easier for those who are not capable to do it on their own. I am fortunate (or not) to have worked for an insurance company for 19 years and have learned the ins and outs and loop holes. If I didn’t have that experience my husband and I would be paying for bills that we are not responsible for. Our blog address is fahrjr.blogspot.com.
Be well!
Denise

Hannah said...

Hi,

This is Hannah Bevills, I am an editor for Hospital.com. We are a medical publication whose focus is geared towards promoting awareness on hospitals, including information, news, and reviews on them. We would like to have our site included within your blog and offer our information to your readers, of course we would be more than happy to list your blog within our directory as well.

Hannah Bevills
hannah.bevills@gmail.com
www.Hospital.com

sameera said...

really a fantastic blog post and I appreciate about your work is that you have mentioned a lot of information that was actually relevant to the work


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