Moments Matter
In almost every lecture or discussion I participate in with nurses about providing quality palliative care, someone is certain to say, "But there isn't enough time." The lack of time is a reality. Patients are sicker, care is more complex, and the pace of care is steadily increasing.
I am, however, reminded constantly of the profound impact nurses have despite the overwhelming factors that are impacting care. Recently, while reading a letter posted on the New York Times website on October 6, 2016, I was reminded of how nurses make precious moments matter. The letter was written by a writer in Boston, Peter DeMarco, whose 34-year-old wife, Laura, died in an ICU following an asthma attack. DeMarco wrote this letter to the staff of the ICU. The letter read:
"As I begin to tell my friends and family about the seven days you treated my wife, Laura Levis, in what turned out to be the last days of her young life, they stop me at about the 15th name that I recall. The list includes the doctors, nurses, respiratory specialists, social workers, even cleaning staff members who cared for her.
'How do you remember any of their names?' they ask.
How could I not, I respond.
Every single one of you treated Laura with such professionalism, and kindness, and dignity as she lay unconscious. When she needed shots, you apologized that it was going to hurt a little, whether or not she could hear. When you listened to her heart and lungs through your stethoscopes, and her gown began to slip, you pulled it up to respectfully cover her. You spread a blanket, not only when her body temperature needed regulating, but also when the room was just a little cold, and you thought she'd sleep more comfortably that way."
He goes on to describe many intimate moments of his wife's care including the attention given to her parents, her friends, and many small details such as offering them food or a hot shower, explaining a procedure or assistance in smuggling in their cat for one final lick of his wife's face.
His words are deep and heart-wrenching as only they could be, spoken from the broken heart of a man who just lost his wife. His letter ends with recollection of another moment:
"There is another moment - actually, a single hour - that I will never forget.
On the final day, as we waited for Laura's organ donor surgery, all I wanted was to be alone with her. But family and friends kept coming to say their goodbyes, and the clock ticked away. About 4 p.m., finally, everyone had gone, and I was emotionally and physically exhausted, in need of a nap. So I asked her nurses, Donna and Jen, if they could help me set up the recliner, which was so uncomfortable, but all I had, next to Laura again. They had a better idea.
They asked me to leave the room for a moment, and when I returned, they had shifted Laura to the right side of her bed, leaving just enough room for me to crawl in with her one last time. I asked if they could give us one hour without a single interruption, and they nodded, closing the curtains and the doors, and shutting off the lights.
I nestled my body against hers. She looked so beautiful, and I told her so, stroking her hair and face. Pulling her gown down slightly, I kissed her breasts, and laid my head on her chest, feeling it rise and fall with each breath, her heartbeat in my ear. It was our last tender moment as a husband and a wife, and it was more natural and pure and comforting than anything I've ever felt. And then I fell asleep.
I will remember that last hour together for the rest of my life. It was a gift beyond gifts, and I have Donna and Jen to thank for it.
Really, I have all of you to thank for it."
This story is both profound and ordinary. It is profound and the very personal account of one life and one death. It is also ordinary in that this kind of care happens often in palliative care. I imagine that virtually every nurse reading this journal could tell a similar story of a time when nurses made the unbearable a little more bearable.
It is also striking to me that this man writes about the most meaningful hour with his dying wife as being the hour he was left alone with her. I learned many years ago that sometimes in palliative care, our greatest gift is our presence; and other times, it is our absence.
And as I read this editorial once again to take in the soulful message of this bereaved spouse, I realized something. That is, never in my 39 years of nursing have I heard a patient or family describe how nurses had hours of time to spend with them. But thousands of times, I have heard stories of the moments of time that remain in the memories of families forever.
Betty Ferrell, PhD, MA, FAAN, FPCN, CHPN
Editor-in-Chief
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