Thursday, October 30, 2014
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 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. A CT scan revealed something suspicious. A pediatric oncologist performed a bone marrow biopsy — and the family’s world turned upside down. David had acute lymphoblastic leukemia (ALL).
Chemotherapy put the disease into remission, and during the next two years David was able to attend school, despite the rigor of the treatment. He remained in remission for two more years, during which he achieved his Bar Mitzvah and won the principal’s award upon his graduation from eighth grade.
A Turn for the Worse
In 1999, after David’s return from summer camp, another bone marrow biopsy revealed that the ALL had returned. His doctors determined that a stem cell transplant was necessary.
The Kanareks brought their son to Memorial Sloan Kettering, where David received a stem cell transplant using a technique called T cell depletion, 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.Back to top
The 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. Several sessions with a child psychiatrist didn’t help, and David’s parents asked that a physician in the Department of Pediatrics speak with him. “We eventually learned that David was in distress about his mortality,” says Robin. “But after David talked with the physician, his mood improved considerably. This shows 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, he eventually succumbed to complications of the transplant.Back to top
The Kanareks Support MSK’s Nurses
After their son’s death, the Kanarek family relocated to London for several years. 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, known as Comskil. This program is designed to train physicians to communicate in an effective and empathetic manner with oncology patients. Its special focus is in addressing the often-challenging conversations clinicians must have — particularly when breaking bad news — and in helping families navigate the issues that arise as a person 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.
“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 pediatric nurse practitioner (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 the 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’re portraying.Back to top
Learning How to Have Difficult Conversations
As of now, more than 40 pediatric nurse practitioners have taken the Comskil training. 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 OK 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 and I 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, 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, a pediatrician and child and adolescent psychiatrist at MSK. “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.”Back to top
“This is profound, pioneering work that would not be possible without the support of the Kanarek family,” Dr. Breitbart says. “What they’re 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.”Back to top