Red Sky in the Morning

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.

Take warning.

The Answer

I have not written much all summer because there is only one medical story on my mind. I have resisted publishing this story until I had something to say that might be helpful for others in a similar situation. Recently, one realization comes back to me again and again and for that reason I write about it now.
My beautiful baby sister is dying. I have been travelling to Halifax to spend time with her, knitting and talking while she lays in bed. I spend the days after these visits with a heartache that will not stop and I find now that I cannot stop thinking about her.
My sister has lived at least five years longer than her doctors thought she would. She has been able to see her daughter start and almost finish nursing school. She was happy to have been well enough to attend our mother’s funeral. If she has any pain, she minimizes it. If she has suffered any distress, she hides it behind her sense of humour. She is suffering from visual hallucinations, likely because of medication. Her thoughts on this: “At least it gives me something interesting to watch.” She is a true believer in positive thinking.
My sister is a great raconteur and she spends these Saturdays telling me the stories of her life. She talks of her friends from elementary school, high school and nursing school, most of whom she has found on Facebook. I am trying to write down what she tells me. When I read it back to her, she listens to my account and says, “Stick with quilting for a hobby.” She laughs at her own joke and then reminds me of how bad a baker I used to be. She tells me about patients she had cared for as a nurse and about how the most important parts of nursing involve “no science at all”. In the middle of one story, she stops and says to me, “I am so glad to see you. I don’t want you to be sad, you know.” I do not want to cry and the heartache inside me intensifies.
I have been contemplating how I will be a comfort to her. I want to be a welcome visitor regularly for as long as possible. It is easy for me to listen, as this is something I do most days at work. I only rarely struggle with people’s painful, emotional stories at work, but my sister is not my work. I have always been very good at separating work from family and, as much as I am diligent at work, I believe that my family needs me not to be a doctor, but someone better. Not that I don’t think being a doctor is important, but I really want to be a good sister in this time when she needs a sister.
This experience with my sister helps me to understand what it is like to be relying on doctors and nurses, how helpless one can feel, even when one has great knowledge. I find myself asking: “Do I remember how helpless a patient or their family member feels when I am speaking with them?” I know that my excessive emotional investment in a person’s care can lead me to errors – mostly sins of commission, rather than omission – but do I do what I can to help people feel at ease with being helpless?
I have been remembering the first time one of my patients died in my internal medicine rotation as a medical student. She was an older lady not expected to live. Her family took turns sitting at her bedside, day and night. I remember stopping to speak with them, day and night, getting them coffee or bringing them things to read or answering questions. I felt so badly because there was nothing I could do. I would sit with them and listen to their stories of their mother.
Thinking of my sister, I read through my journals of the six weeks I spent with this family and realized that I had the answer all those years ago, when I believed I had no answers at all. What on earth happens to doctors over the years that, as we become less helpless professionally, we seem to lose all the answers?

(Note: This is an image of Lawrencetown Beach, the Nova Scotia beach closest to my sister’s home.)