In 2008, Rachel was diagnosed with severe chronic migraines. To improve her experience as patient, Rachel needs more than just medicine, she also needs compassion. She wants to be treated with kindness and respected as a person.
Through expressing the value and importance of seeing a patient as a person, and not just a diagnosis or a statistic, Rachel’s story speaks to the Patient Voice Principles of Dignity and Accountability.
Rachel’s Story:
My name is Rachel Weissburg, and this story was told to the Sibley Memorial Hospital Patient and Family Advisory Council in April 2015. In November 2008, I was diagnosed with severe, chronic migraines. I’ve spent a lot of time in hospitals as a result of this condition. I’ve had the range of experiences – everything from amazingly great care to traumatically awful care. But I’m going to tell you about what it’s like to be me when I arrive at an emergency room, which I do on average about every 4 months.
I’m scared. I’m in so much pain that I want to die, and I’m not saying that as hyperbole.
I am almost always alone. Not by choice, but because of life circumstance. This means I don’t have an advocate. I don’t have someone to help explain what I mean. To remind the nurses or doctors that I’m there, that I need ice chips or a blanket or a pillow or an ice pack for my head. To please turn down the TV b/c the noise hurts or to think to turn the lights off as soon as I’m put into my room. All of these things take effort to speak, because talking hurts. I also have to try and explain that yes, I’ve been there before. I’ve been there about 100 times before. Yes, I know what is happening. Yes, I’ve had a migraine before. Here are my medications. For years I kept a letter in my wallet that my neurologist had typed up that explains my condition, my medications, and what I should be given in the event that I ended up in the emergency room. Now I do this with an app. I give this to triage and to the attending physicians. Almost always, it’s received gratefully. I can see appreciation that I am a prepared patient, that there is a plan that can be followed. Still, I think, why don’t you recognize me? Why is this information not already in the system? Why do I have to answer the same information over and over again when I am one of your best customers?
What I need when I enter the ER are 2 things: I need to be listened to, and related to with compassion.
I have been shown incredible compassion from both nurses and physicians over the years. There have been times when I have literally wept at their kindness. I share this to help you understand that this is almost as big of a need as the relief from the medication that I also receive. It is the other aspect of healing. And let me connect that dot – part of what I experience when I come into the hospital is anxiety that I will not be seen or heard. That anxiety actually increases my pain, and makes it harder for me to both relax and allow the medicine to work properly when I do receive it. If I am receiving both the medication and the kindness, it is amazing to see how much more quickly I recover and go home.
There’s no easy way to summarize what I need out of this patient story. It’s ongoing. My professional career has been focused on improving patient safety and quality outcomes for patients. I’m still passionate about this. But now I work from what I know. I know what I need in the ER, which is someone to listen and respect me as a person, and not just another patient.
