Authors

  1. Dee, Vivian RN, APRN-BC

Abstract

Updated several times a week with posts by a wide variety of authors, AJN's blog Off the Charts allows us to provide more timely-and often more personal-perspectives on professional, policy, and clinical issues. Best of the Blog will be a regular column to draw the attention of AJN readers to posts we think deserve a wider audience. To read more, please visit: http://www.ajnoffthecharts.com.

 

Article Content

In 2008, our organization created a new palliative care wing. No one was certified yet or knew much about caring for palliative care patients. The leadership scrambled to put together learning instructions in the form of PowerPoints and seminars.

 

In the midst of this flux, our unit admitted a homeless man as one of our first patients. Larry was an alcoholic who'd been out on the streets for many years. His health had deteriorated, and he'd developed liver cirrhosis. Since he couldn't afford medical care, he'd opted for palliative care.

 

Larry was unpretentious and polite, and he soon became one of my favorite patients. I met him at the initial team meeting, where we established goals of care. As the days passed, I got to know Larry and his wishes, dreams, and desires. He would talk about his family, and his mother. How he longed to see them one more time. To ask forgiveness and to say goodbye.

 

Days soon turned into weeks, weeks into months. Larry became weaker. Soon it was apparent that it would only be days before Larry took his last breath. Knowing Larry's wish, our team sought to locate Larry's family. After numerous phone calls and web searches, we were able to identify his mother. Unfortunately, she hadn't come to terms with Larry's circumstances and declined our invitation to visit him.

 

We met again and decided to explore the possibility of locating other relatives who might be willing to share their time. But no relative was willing. How could we best help Larry? I struggled to recall the tools I'd learned at conferences. Wasn't the main goal of palliative care to relieve suffering? I didn't cast judgment on Larry's family for not wanting to be around during his last hours. The burden of sorrow, hurt, and perhaps ambivalence must have overwhelmed their capacity to understand and accept Larry.

 

Redefining family. Around this time, as I was walking down the hallways of the palliative care unit, I noticed a cat and a dog walking side by side with our recreational therapist. The two animals, though different in so many ways, were there to provide comfort to the dying. This scene made me stop to define, or perhaps redefine, what family means.

 

Does family have to involve just blood relatives? Does it include only cousins, mom, dad, sisters, and brothers? How about friends? Family in America is diverse; some blended families live and love forever. Blended families aren't all related by blood, yet they are considered a unit. The restless shape-shifting of American families made me wonder if Larry had ever thought of me or his other caregivers as his family. Had he been thinking of us when he said he wanted his family to hold his hand on his deathbed?

 

At the next palliative care meeting, Larry's goals of care and his wishes were discussed. We planned how to make him comfortable in his last days. The plan included making sure Larry had the red pillow he'd had with him at admission, and reaching out to volunteers to take turns keeping Larry's lips moist.

 

Neighbor, nurse, cousin, teacher[horizontal ellipsis] In the last few hours, our team decided that we would take turns staying with Larry and providing him comfort. The nurse, the social worker, the physician, the nurse manager, and I (the NP) took turns visiting. First the nurse went in to hold Larry's hand. We had placed his red pillow under his head. Soon, the social worker went in and held Larry's hand. The physician went next. Then I went. I held Larry's hand minute by minute until he took his last breath and left.

 

I saw peace in Larry's face. I saw comfort, love, and faith-faith in humanity that we would always be there for each other. I realized then that family is a relative term. A family is your neighbor, your nurse, your cousin, your teacher. It isn't bound by blood alone but by love. What makes us one is our ability to love and care without judgment.