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Advocacy: A modest proposal


Whenever I think of nursing, I think of the “ordinary” needs patients present daily. Some are dramatic, but not nearly as uncommon as we’d like them to be.

For example, I remember a 5-year-old girl who was dying of oat cell carcinoma. One day I entered her room and heard her ask, “Mommy, what’s it like to die?” Everything went quiet. Finally, her mother said, “Christy, do you remember when you were at home and you would fall asleep downstairs and Daddy would pick you up in his arms and carry you upstairs, tuck you into bed, and you would go to sleep? Well, dying is something like that, only this time God will pick you up in His arms and you will go to sleep.” At this point I gulped, gave Christy her medications and left—quickly.

Several days later, I entered Christy’s room, this time to find her mother sitting in the chair next to her bed crying. I stopped what I was doing and simply sat with her for a few moments. Christy’s father arrived shortly, and I suggested that the two of them might want to go to the vending area for something to eat or drink.
I promised them I would not leave Christy alone. When they agreed to leave, I made arrangements to stay with her.

Less than 10 minutes later, Christy awoke in severe respiratory distress. I sent for the pediatrician and chaplain (Christy was a “no code”), and the nursing assistant ran to get her parents. I lifted Christy’s small head and shoulders in a futile attempt to ease her distress. Her fear was a naked, palpable thing. She was awake and struggling. I remember feeling enormously inadequate as I picked her up in my arms—oxygen, I.V. tubes and all—and put her head upright on my shoulder to ease her breathing. Then I remembered what her mother had told her about dying. I held her close and whispered comforting words in her ear. Her breathing eased a little and she stopped struggling. She no longer seemed to be afraid.

She died in my arms. I stood there holding her for what seemed like a long time, but it could not have been more than a minute or two. When her parents arrived, breathless, her mother began crying; she knew instantly her daughter had died. A few seconds later, the resident and chaplain arrived.

Ten minutes later, everyone left the room except Christy’s mother. I gently wrapped Christy in a blanket and guided her mother to a chair, where she sat and held her. While she held her, I told her exactly what had happened and answered her questions, over and over again.

The whole thing happened within less than an hour 30 years ago, but you don’t forget something like that—and neither do the patients or their families. Names, situations, successes, failures, heartbreaks—such memories are part of each one of us because we were there. Nurses are with patients during some of the most important moments in their lives. And we try with all our knowledge and skill and heart to help. I’ve seen many technological advances in my career, and they are awesome. But the ordinary people whose lives I’ve touched are what I remember the most.

My experience is unique to me—and yet common to all nurses. Rather than distancing ourselves from patients and families and their pain and fear and anger and rage, we choose to be part of their experience: to hold a child at the moment of death, to share her parents’ pain and, to a small degree, to offer what comfort we can. This is to what it means to be an advocate.

Clearly, legislation needs to be proposed and political candidates need to be supported who will improve health care. That’s why we enable our professional organizations to speak for us as nurses. But just as clearly, there is the modest advocacy of changing lives, one patient at a time.

Leah Curtin, RN, ScD(h), FAAN

Executive Editor, Professional Outreach

American Nurse Today

2 Comments. Leave new

  • a physician colleague - continued
    May 15, 2014 2:43 pm

    one, or are about to. As a hospice nurse, Kathryn deals with dying every day, although most are older patients that don’t affect one quite as strongly as an innocent 5 year-old girl.

    You are absolute right that despite the awesome advances in the healing sciences, the personal element of caring has an immense impact — on patients and families, and on members of the health team. Thank you for sharing your experience of 30 years ago.

  • a physician colleague
    May 15, 2014 2:40 pm

    Dr Curtin,

    While my wife Kathryn was driving us from Carlisle down to the Washington, DC Temple, on Wednesday, I opened the current American Nurse Today on my iPad. I read to her — or more accurately, tried to read — your account of your experience with the young dying Christy. I was overwhelmed with emotion, and had to stop several times and wait a minute or two before I could continue.

    As an emergency physician, I have too often had to tell family members they have just lost a loved


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