Yesterday I travelled to Nova Scotia to visit my sister. I took an early flight that travelled into the sunrise and I could not help but notice that the sky was red, and I remembered the second half of the old rhyme:” Red sky in the morning, sailor’s warning.”
When I greeted her, my sister needed to be reminded who I am, although she began a conversation about her health readily enough. “I’ve got anemia now. They’re considering giving me a blood transfusion and I’m not sure I see the point.” She paused. She gave me a sidelong glance and said, “Just because I didn’t remember your name right away doesn’t mean I’m incompetent, and if you begin to think I am incompetent, don’t say anything.” I was contemplating what the link is between memory and competence when my sister added, “They don’t put enough items on those advance directives,” she said, “I have to consider every single, possible situation that might come up.”
“Such as?” I asked.
“Well,” she said, “I first said yes to the blood transfusion and then found out that I’d have to go to the hospital for this. I still can’t figure out why. I could probably still set it up myself. I forget stuff, but I haven’t forgotten much nursing. They drill everything you need to know into you forever. I don’t want to go to the hospital. I’ll just deal with the weakness. Once they take you to the hospital, you can’t be sure you’ll get away. I remember that too.”
What does memory have to do with competence, if anything? When memory is unrelated to understanding a medical situation, it likely has nothing to do with competence, but I am going to have to think about this. I assess the capacity of patients to make their own decisions on many days at work, but my patients rarely have memory problems.
Being with my sister in this period close to her death has really driven me to contemplate how I’ll ensure that my wishes are followed when I am at the end of my life and may not be able to discuss or assess these decisions for myself. I am such a control freak that I can see these situations being a cause of great distress, and my admiration for my palliative care colleagues intensifies once again. I can imagine families in which each sibling believes their parent would want completely opposite measures to be taken – I know some of these families already.
The statistics regarding what most of us would like at the end of our lives versus what does happens are at odds. Most of us would like to die at home, but most of us are brought to hospital. What needs to be done to change this outcome? Most of us are brought to hospital when it is no longer possible to keep us comfortable at home and I suspect that my sister is correct. It’s not possible to contemplate beforehand every situation that might need to be in an advance directive to ensure that your wishes are faithfully followed.
My flights to and from Halifax were trouble-free. The weather was fine in both places all day. The warning was for a more ominous situation than weather, and I’m not sure what steps to take while I am still competent.