The Good Nurse: Road to Empathy

In the mid 2010’s, I was a brand-new nurse who had started her first job in hospice. I knew that hospice meant people were dying. I knew that as a fact, but it didn’t seem real to me until I experienced my first death on the job. To say the least, I was panicking on the inside.

As I grew more and more experienced, I became more and more comfortable with seeing people pass away in front of me, as well as seeing patients’ bodies after death.

The more you experience death and become comfortable with that aspect of the job, you think you can handle anything. You are trained and prepared on how to care for a patient who is imminently dying as far as comfort, postmortem care, and all the phone calls you need to make after a patient has passed.

But there is something that you can’t be trained for. Something that it took me years to cultivate empathy. You’re probably thinking, “how can she not have empathy? Doesn’t everybody have empathy for those in that situation?”

Empathy is not the same as sympathy. Sympathy is defined as, “feelings of pity and sorrow for someone else’s misfortune.” Empathy is defined as, “the ability to understand and share the feelings of another.”

We are taught sympathy growing up. We are taught to feel sorry for those who are in worse situations than ourselves or our families, but we are rarely taught empathy, that is putting yourself and your emotions in the same space as those who are suffering.

We also have a hard time empathizing with those who we don’t know. The case I am about to discuss is the first time I began to understand and develop empathy as a nurse.

In 2015, I had the honor of working with a child the age of 2 years old who had a diagnosis of Spinal Muscular Atrophy. This disease occurs when there is a lack of spinal motor neuron protein, which is necessary for muscle development and movement.

Motor neurons should normally send signals to muscles from the central nervous system, but they need the spinal motor neuron in order to send these signals.

Without them, the motor neurons will die, which in turn sends no signals from the central nervous system, causing muscles to continuously get weaker.

Diagnosis of this disease typically is early in life, as babies will not reach the milestones that they should be physically. The life expectancy for SMA depends on the type that they have, but overall, it is not long.

When I first arrived at the home, I was greeted warmly by the patient’s mother and grandmother. When I first interacted with my patient, I instantly fell in love with her.

The only motor function she had was the ability to move her wrists and slightly move her head, but that definitely didn’t matter to her. She had the happiest disposition of any child I had ever seen, including the ones who don’t have health disorders.

Over the weeks I began with them, I quickly became very bonded to her. When you are caring for a patient in their home, you are invited into the most personal space you could possibly be in as a nurse.

I began by assisting her grandmother in her care to train myself, and then I soon began to care for her on my own as to provide a relief for her family since caring for this patient was a full time job for the family, on top of the full time jobs and other responsibilities they had outside of the home.

My care would include administering feedings via g-tube, administering medications, bathing, and other ADLs, but my favorite part of her care was playing.

She was always so excited to play with her toys, watch movies, pet her cats, and she loved listening to music and playing her little instruments with my assistance. She would sing with the sweetest little voice you’ve ever heard! She always had a smile and loved to giggle and be silly. Needless to say, this girl stole my heart.

As the months went on, I began to learn more and more about her family. When you’re caring for a loved one in their home, the families become very comfortable with you and begin to inform you about their lives and situations occurring within them.

I learned of very personal situations that occurred within the family that resulted in where they were at that time. The biggest thing I learned from her mother was the struggles of coping with the fact that your only child is dying.

That no matter what you do, there is nothing you can do to stop it. When she spoke of this, I had sympathy. I felt sorrow for her. I felt sorrow for my patient. Of course, I cared deeply for them, but I did not understand what it meant to have empathy.

I spent a year with this family, and I grew more and more close to them, as you do when you’re in someone’s home on a weekly basis. I saw the struggles and the challenges that came with the disease process.

As I experienced the changes in condition, and I experienced firsthand the progression, I began to have different feelings than I had experienced before.

She began to lose more and more motor function, which required the placement of a trach, which led to soon after needing a ventilator to breathe 24/7. As I saw this happen, I began to realize that something was changing. I knew what was coming.

On a week that I had come down with a cold and was unable to work, I received a call from my company. My patient had been rushed to the ER and was unresponsive. I immediately felt a wave come over me like I had never experienced before.

My first thought was of her family. I didn’t feel sympathy, it was completely different. I contacted her mother, and I didn’t hear back for quite some time. After a few days, her grandmother contacted me, and I found out that there was nothing they could do to bring her back.

She had zero brain activity and was going to be taken off the ventilator within the following days. I arranged for a time to come and see her in the hospital.

When I arrived, I saw her family. I saw them crying, holding each other, and grieving. I immediately began to cry. I could feel their pain. My heart had opened up to them, and I felt it deep within me.

When I saw my patient, I held her hand and stared down at her sweet face. Her mother was at the bedside with me, holding back tears. I could feel it. I could understand her pain, not just feel it. I didn’t feel sorry for them, I felt with them.

As I said goodbye to my patient, I left the room with her mother. We shared a hug and she thanked me for all of the care that I provided for her child and also the emotional support I provided to her and her family for the past year.

She told me I was one who listened and supported them during some of the hardest times. A couple of days later, I learned that they removed the ventilator and my patient had passed away.

I learned so much from this experience that I have carried with me throughout my nursing career, and in my daily life as I’ve gotten older. I learned that I am not only providing care to a patient in their home, I am providing care for their families as well.

I am providing emotional support when they are breaking down. I am providing the calm when they are under stress. I am the relief when they are exhausted.

The most important thing I learned? Empathy. I felt with them. I lived it with them through the hardest time of their lives. I am still honored to this day that I was able to care for this patient and her family.