As a nurse myself, I received the biggest wakeup call of my life when my husband of 37 years became an instant quadriplegic as a result of a bicycle accident. He fought for his life for 10 days in an ICU and then succumbed to sepsis. The experience was heartbreaking in every way possible and one that I am still reeling from. The grief has been one thing, but reconciling the kind of care he received is yet another. Excellent clinical care, to be sure, but devoid of compassion.
A world I thought I knew and trusted became a frightening place. We were surrounded by machines, monitors, and masked clinicians. And what I considered to be our private space of healing became a free-for-all where well-intentioned strangers came in and out, doing what they pleased at their own whim. I learned what it was like on the other side of the bed.
Every morning a group of people in scrubs and white coats showed up outside my husband’s room and made decisions based on the numbers and graphs that showed up on their computers, without even looking at my husband. Their discussions took place with their computers and each other. My husband became the data point. Where was the “care” in the healthcare delivery equation?
On the second day, without invitation, I pulled up a chair in the middle of the white coats and held an 8×10 picture of my husband for all to see. I asked them to look at the human being who means the world to me, and for just a few moments to take stock of this life. I did this for every day for the rest of our time in the hospital.
One day, the head of the ICU, a physician, stopped the proceedings, stared down at me and asked me to tell the group what my husband was like. “You mean what he is like?” I said. I talked about my husband and his devotion to me and my family. For 5 brief moments at least, my husband became a human being.
After 10 grueling and brutal days in the ICU trying to save my husband, I decided that he would not want to go on with life. So, on the morning of Oct 4th, I gave the go-ahead to diminish the power on his breathing machine. One nurse, Kathy, gave me the compassion that I needed to carry out the continual medication changes and breathing machine adjustments to ease my husband from this life. She stayed with me all day and did everything she could to bring comfort.
I leaned on her all day for support and reassurance that the decision I made was the right one. She hugged me and said she felt it was. As her shift was nearing its end, with one hour to go, she and I both were desperate to remain together to the end. It was unspoken. She kept diminishing the machine and adjusting the medication but my husband would not succumb. Finally, as 7:00 pm approached, and sensing very strongly that she did not want to leave me, she asked me if I wanted to turn off the breathing machine completely. I said I would think about it. In the meantime, she came back to me to say goodbye with her coat on and her purse wrapped around her chest. I told her that I decided to go ahead and turn off the machine but only if she stayed with me. She threw off her purse and flung her coat to a chair and hugged me and said, “Of course, I would never leave you now.” So, we turned off the machine and within one breath I lost the love of my life. Kathy stayed to fill out the paperwork and hugged me one last time. I walked out to the street shattered and despondent. I knew however that I had experienced the best that nursing had to give.
As a bottom line, skills and evidence are critical, but without empathy and compassion, there would be no true healing. I know this to be true.