Storytelling Medicine: You of All the People in the World

Copyright 2014 by Susan Miranda.

I had decided that you of all the people in the world could be there when I die, and now you cannot be in my life at all.
For about a year, I had felt that I possibly had some terminal illness. Not being inclined to go see a doctor, I had Googled my symptoms for months, and the best guess I could come up with was that it was possibly leukemia or something of that nature.
It would not disappoint me greatly to die alone. But I also acknowledge that we can’t know how we will die and when. There is a reason that I live my life as though I will die any day. It is so that all that needs to be acknowledged, lived and said will be done well in advance of that day. I do not wait to say, “I love you.” When the day comes, there will be no surprises, no unsaid words and no regrets.
I thought long and hard this past year, when I thought I had some disease, about whom I would want with me during the final days of my life. I also knew my biggest health care wishes are to not be in pain and not be kept alive if I were dying naturally. So I picked you, a medical doctor I had never met before, to be there when I died, if needed.
I was so scared to make that first appointment. I dreaded it. I was so sure I would be mistreated and thought of disrespectfully because I don’t want to do health care the way it is done in our society. But you did not treat me disrespectfully. You treated me very well and with high regard and listened as I tried to convey what was important to me.
On the second visit, I told you I was not going to do any tests, and I gave you my health care wishes. I had decided that if I ever had a terminal illness, I would not treat it. My health care of choice in this instance was going to be better nutrition no matter what the test results showed, and I decided I could do that without spending any money on tests. I was, however, very willing to spend the money on the conversations with you about my health care wishes. And I decided I could live with the unknown of what a test might reveal, but I wanted to be assured I had a compassionate doctor available at the end my life should I need it.
So when I told you I would not get any tests done and told you my health care wishes, I could feel the resistance. I could sense that you were thinking that patients don’t do this. I could see the question on your face—Did she just think up these wishes on the spur of the moment? I showed you the date they were written—eight years earlier—and I told you that rereading them eight years later, I would not change a word. I told you that my family and friends—everyone in my life—knows these are my health care wishes. I just needed a doctor, someone who has authority in the system, to know about them as well.
Months went by, and I did change my mind about the tests. Living with the unknown is not always easy. Fortunately, all appears to be fine with my health.
But then, you told me you were taking another job elsewhere for people who need home health care. I know my face dropped, and I was so disappointed. You were the second doctor I would have chosen to be there at the end of my life who told me you were not practicing primary care anymore. I don’t yet need home health care or hospice care, but I know that it will be what I want at some point in time if I need it. However, the system is so compartmentalized that there is no way I could sign up now and keep you as my doctor.
I had decided you could be there when I die. I cannot even begin to describe how angry this health care system makes me for so many reasons, and here is one more. I had decided that you could be there when I die, and now you cannot be in my life at all.
I even went back one last time and asked you to continue to be my doctor and told you that I was willing to pay for your services all on my own, outside of the health care system. Of course, our system does not make that very possible either—although I believe you considered it.
And I told you how much I want the health care system to change and how much I want single payer health care and that this would be part of the story should I ever write what I am wanting to call “storytelling medicine.”
I had decided you of all the people in the world could be there when I die, and now you cannot be in my life at all.

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