Cancer has forced me into this reckoning. First through my advocacy activities, which are mostly collaborations, but also simply through experiencing nearly a decade focused on the life-saving goal of working with others to get the best possible care.
It turns out that collaboration is the name of the game.
I know what I want in my life as a patient, which boils down to clear communication and mutual respect. I also know that I want my healthcare providers to voice their own strong opinions about my life as a patient.
I’ve learned that, for me, the best outcomes happen when we pay attention to what each of the experts brings into the exam room: Me, the patient, the expert on my body and life and the providers, the experts on how to use their knowledge and tools to get me where I want to be or at least as close as possible.
It cannot be my job, as the patient, to keep the peace by collaborating-away my voice.
My job is to make sure that I get the care I need in a way that best matches what I want.
It means continually being watchful of slides into traditional roles, with the doctor calling all the shots and the patient quietly obeying. The ease with which this happens might surprise you. I’ve left appointments where I’ve wondered why I said I would do as I was told, even though I knew full well that I just would not. I have good friends who have followed doctors’ orders to the detriment of their quality of life or their actual survival (or both) who I would never expect to sit quietly and do as they are told. It’s so comforting, in the moment, to have someone else making the decisions.
I understand that.
And even though it can be more difficult, it’s better to aim for team-led cancer, with the team featuring you as the pivotal member.
There are ways to make achieving that easier, things I’ve both learned and ignored over the years. Communication is critical and encompasses not only how we communicate, (portal, phone, etc) but the actual style of communication. Part of collaborative care is that I am one of the collaborators and it is my job to speak up about what I want.
Communication failures are the most difficult for me. When the doctor doesn’t seem to listen to what I am saying, it is frustrating and brings along some difficult reminders of how powerless being a patient can feel. The flip side failure occurs when the doctor isn’t complete in her own explanations. I don’t let these failures slide. That’s because clarity and understanding about treatments and side effects, about upcoming appointments, about who does what and when make a huge difference in how easy it is to actually live life while also being treated for cancer.
My need for clear, complete, and open communication reflects how I feel about mutual respect. I am a person before I am a patient and nowhere else in my life, excluding some unfortunate past jobs, would it be acceptable for someone else to determine where I will be and what I will do without taking me into consideration. I don’t let that slide either.
Each member of my team has their own list of non negotiables. Things I’ve picked up on over time or that they’ve communicated clearly and usually repeatedly, which reminds me that I’m still in a growth phase when it comes to collaboration.
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