Truly Understanding Quality of Life
How can you truly assess someone’s quality of life?
I can’t tell you how many times I’ve asked, rhetorically, “What is this patient’s quality of life?”
This question has come up in hundreds of conversations over the period of my nursing career. I’m usually asking this question within the context of an ordered treatment or test that I don’t see as beneficial. The conversation usually involves the physician, case manager, educator, and therapist… but rarely with the patient. I think I know my patient well enough (even though, generally speaking, I had just met them 6 to 12 hours prior).
How is it possible for a nurse to advocate for a patient and truly assess what quality of life is for them?
I had a humbling experience once. I was taking care of a patient that had a terminal illness. I felt the need to advocate on behalf of the patient in regards to some tests and treatments that were ordered, that I did not foresee to be beneficial. When I brought this up to the doctor, the response was “well how do you know what quality of life is for your patient?” I couldn’t tell if the question was condescending, or if the doctor was trying to inspire me to look a little closer at what my patient wants before speaking on their behalf.
The question had me completely and totally dumbfounded. Well, it seemed like they would want to be with their family, undisturbed by unnecessary medical treatments and medication regimens. (I assume).
Afterward, I went into the patient’s room, sat down, and ask what quality of life meant to her. She sat there, silently for a while and then finally looked up and said, “Well it changes from day to day.”
“Ok. That’s not helpful. That doesn’t give me a solid, concrete answer to help me advocate for you. I need concrete examples,” I thought.
Then, she went on to explain that her functional abilities fluctuate on a daily basis, and each day she has to assess what is the most important thing to her.
I thought to myself, “how exhausting, that must be. How completely and totally draining that would be.”
However, she proclaimed the opposite. By looking at her quality of life in terms of just the day ahead of her, things were simpler. She wanted to eat dinner with her family. She wanted to be able to have enough strength to brush her hair. She wanted to be able to change positions in bed without exacerbating a painful muscle spasm that took hours to come back from. Stuff like that.
“Well, then what about the treatment plan the doctor discussed with you. How do you perceive that will affect your quality of life?” I asked.
She stared at me. “As long as the treatment doesn’t interfere with those things, I’m fine with it,” she proclaimed.
The patient went on to accept the treatment option and continue with her care. She needed a treatment that allowed her just simply go through the daily inventory of “how am I feeling today? Can I do this? Am I up for that?”
Now, looking back, I will make sure that I take the time to truly understand what my PATIENT perceives their quality of life to be, not what I as the nurse perceives it to be. I have no idea what this person’s life is like after I leave at the end of my shift tonight. I want to make sure that I can advocate for my patients on THEIR terms, not mine.
Learning how to assess someone’s quality of life takes time. Be humble, be open, and make it about them… not you.