Shortly after my mother was diagnosed with the lymphoma that would take her life, I was chatting with her and my stepfather about upcoming appointments. I don’t remember the details, but he and I started anticipating the course of her treatment “first this, then that, followed by something else if another thing happens.” We were trying to plot out the twists and turns of a journey that is unpredictable, although we try our best to pretend otherwise. The conversation rapidly turned into my stepfather and I talking about my mother’s illness without including her in the discussion.
Hey, she interrupted. You know, its my choice.
What do you mean? We turned our heads towards the woman we loved.
Its my body. I will decide whether I want treatment or not.
And she did decide. She made many choices along the way. She filled out informed consent forms. She received printed lists of side effects, weighed pros and cons, talked to doctors and nurses and friends and family. She said yes to chemo, many times over, knowing that it could trigger a cascade of events that could be life threatening. She said no to surgery, no to palliative radiation at the end of life, procedures that had the potential to give her more time, less pain. Or maybe not. Who knows?
When I was working in bone marrow transplant, I thought the informed consent process was complete bullshit. How could people know, really understand, what they were agreeing to? The pages and pages of potential risks and benefits, but really what it comes down to is a single patient plunging into the cold water. Some resurface on the other shore, some don’t, and you can make some predictions about probabilities but more or less, these outcomes remain the domain of powers greater than human insight. We can ask a patient to sign on the dotted line of consent forms, but for all the information and teaching and collaborating, any health care choice remains a leap of faith.
Life isn’t much different. I’ve made choices that showered me with blessings, others that haunt me, a cluster of silvery specters that float in the corners of my mind during in the early morning hours. We all have moments where we reach a crossroads, and sometimes we don’t even realize these moments are occurring, have occurred, until years later. I’ve hit the junctures, I’ve tried to be informed, as best as I could be, but I didn’t really know what I was doing. Its a plunge into icy waters, a journey into the unknown, a grasp at the hand of God. I’m still swimming.