Communication is an evergreen problem in healthcare. Whether the problem is a patient with low health literacy or a doctor who can’t explain complicated subjects in a simple way, important messages do not get from one person to the other.
There have been many efforts to get doctors to communicate in a more direct, less jargony way. Now it’s time to help patients learn these same skills.
Imagine if a patient could explain his condition, his daily challenges and even his emotional state to doctors in a clear, calm, specific way. Learning the skills of storytelling could change the entire dynamic of the exam room.
Sarah E. Kucharski is in the last two days of a crowdfunding campaign to support this revolution. Kucharski is raising money to attend Columbia University’s Narrative Medicine program headed by Dr. Rita Charon. She is the chairman and CEO of FMDChat. The group supports people affected by fibromuscular dysplasia including patients, family members, caregivers, and healthcare professionals.
Kucharski spoke earlier this year at ENGAGE and just a few weeks ago at Medicine X at Stanford – her ePatient Ignite talk is magnificent. She is completely plugged in to the world of patient activism, so you can be sure she will use her training at Columbia to help others.
Kucharski has built a career in news writing, public relations and teaching. She describes her reason for writing this way:
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
I write because writing is the most efficient and effective way to reach into my soul, grab the slimy bits, pull them out, and put them on display. Why I want to put them on display is another question altogether. I need to. I must. If I don’t, they fester and rot such that great sadness consumes me.
We all need to be able to look at and understand the slimy bits – even if you are the healthiest person in the room, even if you think you can talk about death with your parents or spouse, even if you have your living will in place. Having difficult conversations about illness and death sounds doable in theory, but the best intentions disappear instantly when you are looking someone you love in the eyes and trying to figure out how start talking about what is important.
As of Wednesday, Kucharski needs only $405 to fund her storytelling trip. Pitch in what you can and support her storytelling in healthcare cause.
