Claire Wineland has a lifetime of experience with patient-centered care. The 20-year-old cystic fibrosis patient spent much of her youth in hospitals, growing up surrounded by doctors and health care professionals. Those years observing physicians gave her clear insights into what it means to focus on the patient, not the illness.
Wineland will share her perspective at OMED 17, Oct. 8 in Philadelphia. Following is an edited interview.
You offered great advice on interacting with a sick person in this video. What specific tips would you give to doctors about relating to patients?
Doctors lead a team of health care professionals, and they expect everyone on that team to contribute to a patient’s care. But they don’t always extend that expectation to the patients themselves. When they do, it can make a huge difference in a patient’s outlook and desire to fight their illness. They feel like an active participant in their treatment rather than a passive bystander.
I’ve always thrived when I had doctors who expected a lot from me, and expected me to take charge of my own treatment.
I worked with one doctor, who I’ll call “Dr. Indy,” who really partnered with me. He shared way more details about my condition than my other doctors had. He expected me to report back to him on how my treatments were going and come up with suggestions to improve them.
For example, he asked me to do vest treatment four times a day. I reported back that doing it that much was too hard on my lungs, and suggested three times a day instead. Then he said we should try twice a day and add in a different treatment. So it was really more of a conversation.
What else did “Dr. Indy” do that made your experience with him stand out so much?
I have a doctor now who really believes that there’s going to be a cure for CF soon. So his attitude is that you just have to keep people alive long enough and then everything will get fixed.
What I loved about Dr. Indy was that he wanted to try absolutely everything to make my actual day-to-day life significantly easier. It was really refreshing for me to have a doctor who was so hopeful about making my time spent waiting for the cure enjoyable and not just a fight.
What should doctors know about working with cystic fibrosis patients?
CF is a terminal illness. As patients transition from childhood to adulthood, physicians should understand that their priorities change.
When you’re a kid, CF treatment is often all-encompassing. You’re in the hospital a lot, you’re doing a lot of treatments. By the time you’re an adult, you can’t spend all your time in treatment or you’ll never be able to accomplish your goals.
It’s really important for adult CF patients to pursue their life goals when they’re young because they have a limited life expectancy.
Physicians should talk to their adult CF patients about what they want to accomplish and what kind of quality of life they want. Then, they can tailor their treatment plan to help them achieve that instead of being laser-focused on the optimal treatment, which may be too time-consuming.
How does the osteopathic philosophy align with the kind of care you’re looking for?
You have to look at a patient’s whole life. What’s important to them? What gives them purpose? It’s so important to treat patients as full human beings who have something to offer.
That’s what I find really beautiful about the osteopathic philosophy of treating the mind, body and spirit. For me, my mental state and how I view the world has just as much to do with whether I’m going to be healthy as my pulmonary function test results. DOs really get that. They understand that physical health is just one component of someone’s life experience—and that it’s interconnected with their mental health, environment and outlook.
For more info on what’s in store for OMED 2017, read the following articles: