"While this is a topic most people - even nurses - avoid, it was a most informative presentation for me," said a participant in the session on "The Art of Pediatric Palliative Care Nursing" at the Association of Pediatric Hematology/Oncology Nurses (APHON) 34th Annual Convention, October 14-16, 2010, in Minneapolis, MN. The session was led by Kathy Perko, MS, PNP, CPON of Doernbecher Children's Hospital in Portland, OR, and Cynthia A. Stutzer, RN, MS, of British Columbia Children's Hospital in Vancouver, BC, Canada.
Despite great advances in cure rates, some children with cancer die each year. Perko and Stutzer explained that while pediatric oncology nurses have expertise in caring for children receiving treatment for cancer, during difficult times - including at end of life - many nurses are more comfortable "doing for" the child and their family than "being with" them.
Perko and Stutzer discussed ways to emotionally support a family at the time of a child's death and strategies to improve communication with children and families at end of life. They noted that nurses often ask, "What do I do? What do I say?" as they struggle to provide high quality pediatric oncology palliative care.
In the session, Perko and Stutzer addressed grief, companioning, getting to know each other, listening, reflecting, responding, and attending to the individuals physically, mentally and verbally. They presented practical ideas to assist nurses in developing their own "toolkits" as they learn and remember the art of being with a child and their family at the end of life.
"We need both the science and art of nursing to care for children and their families at the end of life. Don't be afraid to 'think outside the box' in providing pediatric palliative care. Communication is the cornerstone in planning and providing care for children and their families. Your presence is a gift that only you can provide for families at the end of life," Perko and Stutzer concluded.
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