Plot
The pediatrician and nutrition support clinician ask the parents of an 8-year-old child to meet with them to discuss the parent’s request for a feeding tube for their daughter. The pediatrician feels that parents should be honest with their daughter about her clinical status and not continue with more medical treatments, including insertion of a temporary nasogastric feeding tube to supplement her minimal food intake. It is apparent to the healthcare team that the child is dying of the leukemia and is not responding to the medical treatments. Her parents are not able to accept that their daughter is dying and do not want their daughter burdened with the bad news.
Cast Members
Script Writers:
Yimin Chen, MS, RD, CNSC
Kelly Green Corkins, MS, RD, LDN, CNSC
Denise Baird Schwartz, MS, RD, CNSC, FADA, FAND, FASPEN
Mary Pat Turon-Findley, MS, RD, LD
John Wesley, MD, FACS, FAAP, FASPEN
Dr. Wesley in discussing your favorite line from ACT 2 you stated, “I am a strong advocate of communicating to pediatric patients the truth about their illness and proposed therapy using language appropriate for their age.”
How young a child have you found this to be beneficial for the child? Was there a particular concept, when discussing the child’s illness and proposed therapies that enhanced the understanding of the information by the child?
This Act is very emotional not only as a parent, but as a practitioner. I am excited to be a part of this presentation and I feel it will help clinicians have a better understanding of end of life decisions. I encourage CNW15 attendees to join the discussion at this presentation. It will be practice changing.
Kelly, I agree ACT 2 is very emotional, especially dealing with the illness of a child. When we finished the rehearsal earlier this week for ACT 2, you made the comment about being “brought to tears”. Concepts in ethical decision making are different in pediatric versus adult patients and their family members.
Fortunately at CNW15 attendees will be able to learn about the The A.S.P.E.N. Pediatric Nutrition Support Core Curriculum, 2nd Edition, that includes a chapter on ethical issues in providing nutrition.
CNW15 attendees are invited to a meet and greet event at A.S.P.E.N. Bookstore in Long Beach, California. This event is free and open to all CNW15 attendees. Stop by the bookstore, check out the text, and meet the editors, authors, fellow reviewers, and others involved with the book.
LOCATION: A.S.P.E.N. Bookstore (Promenade Lobby)
DATE: Monday, February 16th
TIME: 9:30 a.m. – 10:30 a.m.
Denise: I am am often amazed at the level of understanding pediatric patients (starting about 5-6 years) have about their illness and especially terminal conditions. They respond best to honest answers and simple explanations. One of my most moving examples was a 6 year old girl who was facing bilateral leg amputations do to gangrene following a simple strep throat infection (a rare condition called Purpura Fluminans) whose parents couldn’t bear to tell her, and asked me if I would tell her first. I carefully prepared what I would say, and as I gently explained the situation to her, she smiled and said “Dr Wesley, I have known for several days that my black legs would have to be cut off. I have just one question: Will I get my legs back when I go to Heaven?” I gave her a big hug, and said “yes, you certainly will get your legs back when you go to Heaven!” She made a full recovery, and soon preferred hopping around and propelling herself with her hands than walking with the protheses that were made for her.
It is truly eye-opening at times how the patient will come to terms with his/her true clinical condition/status before family members do, and it is often difficult to watch the patient him/herself has to be the person to convince the family when it is time to let go. It is especially heartbreaking when the patient is a child, who probably spent an entire life listening to his/her parents. I am also often surprised by how many members of the medical team do not understand the emotional tie between nutrition and end of life discussions, and find myself having to explain to the medical team why it is important to be aware of this strong emotional tie and really practice active listening to adequately communicate with the family members.