By Caroline Wilkie
I am a kidney patient who has been on dialysis for the past four and a half years. I am passionate about spreading awareness about kidney disease. So when I got an invitation to speak at the Institute of Medicine last month, I was excited and a bit nervous—I am not a huge fan of public speaking! I was part of a panel that spoke at the Evidence Communication Innovation Collaborative meeting on shared decision making in end-of-life care and chronic illnesses. This is obviously an important, sensitive topic that needs to be addressed. Shared decision making is a collaborative process that allows patients and healthcare professionals to make decisions together. It utilizes the experience of the professional while also considering the preferences of the patient. Often, patients are not fully informed of all our care options. This process ensures patients have the information we need to make decisions and empowers us to take control of our health.
The first panel to speak consisted of healthcare practitioners and researchers explaining the different aids that are used in shared decision making as well as strategies that work and some that have not worked. One doctor spoke about the changes in medical training throughout the last 20 years and how shared decision making is a relatively new tool. Not all healthcare practitioners who are practicing today were taught its importance.
My panel was on patient perspective. I shared my personal story with kidney disease and talked about my experience with the National Kidney Foundation’s Peers mentoring program, explaining how much of an impact mentoring has on anyone with a chronic illness. I think I brought a unique perspective in that I was the only patient that did not have any type of medical background. The other patient who spoke was also a nurse. As I have been sick since I was very young, I am very comfortable around medical professionals. One of the things I spoke about was the fact that many healthcare practitioners don’t take the time to sit and explain things in detail to a patient, or, if they do, they often use very technical language. I told them that one of my main jobs as a mentor is to translate all the jargon into simple, easy language. I also talked about how a diagnosis such as kidney failure has a strong impact on emotional well-being—something that healthcare practitioners often forget!
After my panel, we discussed how healthcare practitioners can do a better job using shared decision making. One member of the group told me that I represent a small number of patients who are not only extremely involved in their own healthcare but also extremely knowledgeable about their conditions. This has to change. As patients, we need to learn as much as we can about our condition and not be afraid to ask questions. When patients are not involved or knowledgeable, it makes it that much harder on the healthcare practitioners to share the decision making!
Overall, it was a great experience. I learned a lot from the other speakers and I like to think that they learned a little bit from me as well!
What are your thoughts on shared decision making? Do you feel you know enough to make informed decisions about your health? Do you find that managing your healthcare is a collaborative process?
Advocacy in Action 
My son was born with complex kidney and bladder issues and currently has stage 3 kidney disease age 13, it is incredibly difficult to get the information I feel I need to make the correct informed decisions for his future. I do not fully understand the implications of his health issues and have asked and asked for more information it is never forthcoming. I try very hard to work with the health specialists and do feel they are the right people to help Charlie when he needs help but they appear to be totally the wrong support system to help me to prevent future damage and problems. If there is any help out there I would love to have it, I too am passionate about fund raIsing and have offered to raise large sums of money for research that too has fallen on deaf ears.
Hi Caroline Wilkie, you have explained a patient’s concern and curiosity very nicely. I can very well connect with your thoughts because I have seen my mother on dialysis for six years and as a daughter I was a part of her each fear and pain. I think you have correctly said that each detail should be clearly explained and discussed in easy language to the patient and his / her family before deciding any option and it has to be a shared decision making.