Sylvia, Caregiver
Sylvia was a caregiver to her father who was in and out of the hospital for years related to complications from living with type 1 diabetes and heart disease. He had several amputations, the biggest being a below-the-knee amputation that resulted in a prolonged hospital stay where he eventually became unable to make his own health care decisions. Sylvia, her father’s legal substitute decision maker was called upon to make critical decisions on his behalf to manage his care. In her own words:
I faced the enormous decision to continue or to take my father off life support without confidently understanding all the information which, in my opinion, was presented to me with very little empathy. I replay that conversation [in my head] often. I don’t regret the course of action, as I know my father would have supported it, but I do wish I understood better what was being asked of me in that moment.
"The doctor didn't seem to take any time to understand where I was, if I was understanding the information, or if I was okay. Everything seemed to center around the decision making and not my dad."
Looking back, because I thought diabetes was more manageable, I didn’t feel like I was given a clear picture of what his health could look like as things worsened. It seemed like my family and I had to fight for information every step of the way, and even then, it wasn’t really clear to me that this was going to be a life-ending disease for my father. I’ve learned that diabetes, and the complications of it in later stages is as grave as any terminal illness and I wish it could have been communicated as such.
When we showed Sylvia our program’s Patient and Family Guide, outlining topics such as Power of Attorney for Personal Care and questions to consider asking a member of the health care team when facing serious illness, she responded by saying: “I think this guide is incredible. The language [in the Patient and Family Guide] is clear and patient-centric. It makes it abundantly clear that the team is looking out for your well-being and provides great prompts that you can ask questions from to learn more about your personal situation. This is particularly helpful when you might not be thinking clearly or you feel anxious after hearing tough news. The language is warm and caring and would have likely changed the way I experienced care as I spoke with the doctors about my dad’s unfortunate situation.”
She went on to say: “I think the work being done at The Conversation Lab in this area is incredible and believe that good communication leads to reduced frustration and stress on both sides.”
