MEMORIAL SLOAN-KETTERING CANCER CENTER, NY, NY
The Kanarek Family Foundation financially committed with the Memorial Sloan-Kettering Cancer Center to integrate pediatric nurse practitioners into their advanced communication skill program and research lab, COMSKIL. The funding was specifically used to establish, develop and implement an additional communication module to their program and was titled, Training of Pediatric Nurses in Pain and Palliative Care. To date, over 70 pediatric nurse practitioners have completed the groundbreaking program.
The death of one courageous young man, and the vision and generosity of his parents, are making a difference for pediatric cancer patients at the end of life, as well as for their families.
For the Kanarek family, life changed forever on an otherwise ordinary evening right before dinner when 10-year-old David, playing in the kitchen with his younger sister, Sarah, suddenly fell, saying that his legs had "buckled." By the end of that week, he was unable to walk.
David's parents, Robin and Joe, took him to see his pediatrician. One by one, benign conditions were ruled out. Finally, a CT scan revealed something suspicious. The Kanareks were referred to a pediatric oncologist, who performed a bone marrow biopsy — and the family's world turned upside down. David had acute lymphoblastic leukemia (ALL).
He began chemotherapy immediately and went into remission within three weeks. He was able to resume school, despite having to continue on an aggressive chemotherapy protocol for the next two years. Following the completion of chemotherapy, David remained in remission for the next two years and this remarkable young man achieved his Bar Mitzvah and won the principal's award upon his graduation from the eighth grade.
A TURN FOR THE WORSE
In 1999, after David's return from summer camp, Joe and Robin noticed he was limping and holding his hips with his hands. Another bone marrow biopsy revealed that the ALL had returned and doctors determined that a stem cell transplant was necessary.
The Kanareks decided to bring their son to Memorial Sloan Kettering where they met with Richard O'Reilly, Chair of the Department of Pediatrics and Chief of the Pediatric Bone Marrow Transplant Service. "Dr. O'Reilly spent a great deal of time at that first meeting simply getting to know David before turning his attention to us," recalls Robin. "Then, having reviewed David's medical records, he suggested a groundbreaking technique in stem cell transplantation called T cell depletion, in order to minimize the chances of graft-versus-host disease (GvHD)." GvHD is the most frequent acute complication following transplantation and occurs when immune cells from a donor attack the normal tissue of a transplant patient.
A TRANSPLANT — AND A CHANGE IN BEHAVIOR
David's transplant was successful, but during the required weeks of isolation following the procedure, he became increasingly short-tempered. Robin and Joe asked that a child psychiatrist see David to explore the change in his behavior. After several sessions with the psychiatrist, David reported that the sessions weren't helping. Robin and Joe then asked a physician in the Department of Pediatrics to talk to their son.
"Following that conversation, we learned that David was in distress about his mortality," says Robin. "But after the session with the physician, David's mood improved considerably, which highlights the fact that even with very difficult issues, appropriate dialogue and counseling can improve the situation for both children and parents."
David finally left the hospital. However, despite having received a T cell-depleted transplant, he eventually developed graft-versus-host disease and succumbed to its complications.
After their son's death, the Kanarek family relocated to London where Robin, a registered nurse, became involved with an organization called the Teenage Cancer Trust (TCT). "Through TCT, Robin met a nurse whose specialty was dealing with end-of-life care for teens," recalls Joe. "It was through her relationship with this nurse that she discovered how effective advanced-practice nurses can be in helping at the end of life — and it was then that the idea of delivering this type of service in the United States was born in Robin's mind."
THE KANAREKS' SUPPORT FOR MSK'S NURSES
Following their return from England, Robin and Joe began to seek an activity at MSK that they could fund in their son's memory. The discussions centered on MSK's Communications Skills Training and Research Laboratory (Comskil). This program is designed to train physicians to communicate in an effective and empathic manner with oncology patients. Its special focus is in addressing the often-challenging conversations clinicians have — particularly when breaking bad news — or in helping families navigate the issues that arise as a patient approaches the end of life.
Over the past decade, Comskil training has been available for all MSK physicians and clinical fellows. Joe and Robin, through their Kanarek Family Foundation, saw an opportunity to extend the training to pediatric nurse practitioners (PNPs).
"We wanted to constructively honor the memory of our son by expanding the scope of nursing practice and providing psychosocial support to families," Robin explains. "When David was extremely ill, we needed that help and recognized that this was a service that could be improved upon. Now we have a way to assist others who are in circumstances similar to the one in which we found ourselves 14 years ago."
Housed in the Department of Psychiatry and Behavioral Sciences, Comskil training takes place in a state-of-the-art facility that includes a classroom and six video-recording training rooms where participants hone their skills with trained actors playing roles that range from a patient to bereaved parents. An MSK psychiatrist and a peer — in this case, a nurse practitioner — act as co-facilitators with two or three trainees participating at a time.
Before each scenario, facilitators can give the actors instructions, such as the intensity of the emotion desired. So, for example, in one scenario a PNP (the trainee) supports parents (played by the actors) who are confronting the idea that their child may die. The facilitator may ask that the actors weep, or that they react with anger — or any of a range of emotions a nurse practitioner might confront at such a moment.
At the conclusion of a scenario, trainees are able to view a video to see exactly what they were doing and learn where they can make improvements. Trainees also receive feedback from their co-trainees, the facilitators, and even from the actors, who often remain in character throughout and provide feedback as the characters they are portraying.
LEARNING HOW TO HAVE DIFFICULT CONVERSATIONS
As of now, more than 40 PNPs have taken the Comskil training. Pediatric nurse practitioner Anne Casson, a member of MSK's Department of Pediatrics for 21 years, is one of them. Ms. Casson was David Kanarek's nurse before, during, and after his stem cell transplant. She is also a Comskil facilitator.
"None of us likes having difficult conversations," she says. "But if a child is approaching the end of life, you need to have these honest exchanges with families. In Comskil training, you actually learn to use the word 'death,' which is not easy for many of us. You learn to ask open-ended questions, and to be okay with silence — even that is a skill that can be taught. Comskil has become a very important part of our ongoing MSK training, and my colleagues are excited to have the opportunity to participate. We want to do the very best we can for our patients and their families. Comskil helps us achieve that."
“I think when people hear about talking to parents about a child dying, the feeling is of being overwhelmed with helplessness,” observes William Breitbart, Acting Chair of MSK’s Department of Psychiatry and Behavioral Sciences. “’My God,’ they ask, ‘what can you possibly say?’ However, if you are taught skills — how to help, how to communicate effectively, how to make a positive difference in a family’s life — then the experience doesn’t induce helplessness. It induces a sense of incredible reward.”
"Robin's commitment to nursing, palliative care, and pediatrics has really made this Comskil project come into focus and to be executed fairly rapidly," adds Julia Kearney, MSK pediatrician and child and adolescent psychiatrist. "We've already completed a full round of training and we're developing a new protocol. The Kanareks' commitment is genuine, meaningful, and an inspiration to us."
"This is profound, pioneering work that would not be possible without the support of the Kanarek family," Dr. Breitbart says. "What they are doing in terms of helping us develop and expand this program will result in making it available to those far beyond the walls of Memorial Sloan Kettering. It will have an enormous ripple effect on many thousands of lives. This will be David's legacy."
"While physically David is gone, he is in our hearts and minds every day," Robin concludes. "And these activities keep him alive and growing in spirit."