I was asked to be a guest blogger on the Informed Medical Decisions Foundation blog for Shared Medical Decision Making. They asked me to respond to some questions which they posted here and I am posting here also.
1. What prompted you to become engaged in your health care? Tell us your “ah ha” story.
Even though I am only 15, I have a lot of healthcare experience. I was diagnosed with a rare autoimmune disease called Juvenile Dermatomyositis at the age of 11. Over the years, we have faced many decisions that had to be made about my care. In January of this year, I was hospitalized for meningitis that I developed after getting an IV treatment. After four days of getting little sleep due to a horrific headache and high dose steroids, I was frustrated by two main things. First, the different med students, residents, attendings, and specialists all came to see me at different times and they started waking me up at 6am and came at staggered intervals all morning which kept me from resting. I believe sleep is critical to healing. Secondly, one of my doctors kept taking my mom into the hall to talk about my care without talking to me first. Even if I can’t make the decision as a 15 year old, I should at least have a say in the discussion. I made a video that got a lot of attention about patient experience. It can be found here.
2. Can you recall a time when you pushed back or challenged your doctor to get the care you needed? What surprised you about that experience?
Last fall, I was recovering from a really rough few months and I had been doing school from home as a hospital/homebound student. One of my doctors said I should go back to school because it would be better socially. I explained that I was exhausted and feel worse when I go to school which means that I don’t feel well enough to do things that I enjoy like riding horses. By the time I get to the barn, I don’t have any energy or I don’t feel well enough to ride. If I do homebound school, I can focus on school but also have some energy left for fun activities. Regardless, I get to see my friends outside of school so going to school isn’t required for social needs. This was surprising to me because it seems that healthcare is not completely focused on the patient’s health and their perferences.
Another example involves the nursing staff. I do not like to get the blood drawn from the IV site when they come to start my IV because I think it hurts worse than getting two sticks that are fast. Also, the blood drawn from my IV is often clotted and has to be redrawn which is usually done at 5am in the morning! When I told one nurse that I didn’t want her to draw the labs, she was very upset and kept trying to assure me that she could get it and that it wouldn’t clot. Later, I heard her in the hall telling my regular nurse that I had REFUSED to let her draw the blood from the IV. I was very surprised because it seemed like a reasonable request that got them better blood samples for the tests they were running and was less pain for me.
3. Some patients are hesitant to become involved in the decision making process. What would you say to empower them to take an active role?
You are the only one who knows your body and your preferences. The only way that you will get the treatment that you need is if you speak up and share your concerns or preferences. If your doctor isn’t willing to work with you, don’t feel like you have to stay. You can always change doctors to get the care you need.
4. Some providers think patients don’t want to be involved in the decision making process. What would you say to change their minds?
You should always at least ask the patient if they have any questions or concerns. You can’t just assume that people don’t want to have a say in their treatment. I think most of the time people want to have input but are scared or don’t think they can.
5. In an ideal world, what does patient-centered care look like?
In an ideal world, care would be completely focused on the patient, and their needs, wants, and health. Also, when there are financial differences in treatment options, that should be explained. In an ideal world, healthcare would really not look much like it does now. Progress is being made, but it really isn’t close. Many things can be done at home instead of in the hospital, and when you are in the hospital, it should be focused on what is good for the patient and not so much around what is good for the doctor.
I would love to hear your thoughts on shared decision making as well as comments on my thoughts above. Also, please visit the Shared Decision Making blog to read other patient stories such as Ra’Shaun Glass, Jeff Hansen, Christie Aschwanden, as well as other great topics.