Presentation Description: Treating survivors with profound and devastating late effects is a sobering and sometimes guilt-inducing experience. We can ‘cure’, but at what cost? This interactive group discussion, moderated by Jonathan Hellmann, Neonatologist and Ethicist at SickKids in Toronto, explored the burden of curing and the ambiguity that pediatric oncology professionals delivering survivor care may face when re-examining treatment decisions made years ago, and their consequences. Three vignettes were presented to kick-start the discussion.
Moderator:
Jonathan Hellmann, MBBCh, FCP, FRCPC
Clinical Director, Neonatal Intensive Care Unit
Hospital for Sick Children, Toronto
Presentation Description: The advent of social media has prompted a major shift in the clinician-patient relationship. The opportunities for patients and their family members to engage with health care providers using social networking sites hold the promise of enhancing communication, strengthening the therapeutic alliance, and bolstering patient satisfaction. Indeed, some would argue that clinicians have an ethical obligation to interact with their patients in the electronic space and we now have numerous examples of providers who have succeeded in doing so. On the other hand, clinicians’ increasing use of social media and their interactions with patients in that setting can yield new ethical dilemmas. The potential for lapses in medical professionalism has led some to adopt very restrictive policies which would limit or even prevent clinicians from communicating with patients using social media.
This presentation elucidated both the promise and the pitfalls of integrating social media into the clinician-patient relationship. Unique considerations relevant to both cancer care and pediatric practice were reviewed. Moreover, we considered how to educate clinicians and develop ethically sound policy to allow for optimal interactions with patients using social media.
Speaker:
Jennifer Kesselheim, MD, MBE, EdM
Pediatric Oncologist
Dana-Farber/Boston Children’s Cancer and Blood Disorders Center
Arnold P. Gold Foundation Assistant Professor of Pediatrics
Harvard Medical School, Boston
Presentation Description: The umbrella that POGO provides to ensure the equity of care for children with cancer across the province encompasses a wide range of programs and activities. These commonly engage numerous stakeholders in the hospitals, other institutions, government and the community. While it is not possible to highlight all the programs that POGO has engaged in over the last 30 years, this session focused on four innovative activities that POGO has led, and that have left indelible marks on the enhancement of care for children both in Ontario as well as beyond its borders. 1) Guidelines for supportive care have been developed, adopted and implemented throughout the pediatric oncology community; 2) the POGO satellite system has enhanced the quality of care close to home and enhanced the quality of life for families across the province; 3) a new initiative of a centralized ethics review will lead to improved efficiencies and comprehensive engagement of all treating centres for children eligible for enrollment on clinical trials; 4) development of a set of benchmarks (quality indicators) has provided a unique framework to evaluate the quality of systems for the delivery of care for children with cancer. These efforts showcase the impact that POGO has had on the pediatric cancer community.
Guidelines for Supportive Care
Carol Portwine, MD, FRCPC, PhD
Pediatric Oncologist, McMaster Children’s Hospital
Associate Professor, Department of Pediatrics
McMaster University, Hamilton
Satellite system
Childhood cancer care is definitionally intense, arduous and takes place over elongated time frames. Since care is typically centralized in tertiary centers, this pattern of care imposes enormous stress on families and patients. In an attempt to address this disruption of lives, POGO developed a system of devolved designated care centers in which defined components of care can be delivered. This presentation briefly described that system.
Mark Greenberg, OC, MB, ChB, FRCPC Senior Adviser, Policy & Clinical Affairs
Pediatric Oncology Group of Ontario (POGO), Toronto, ON
Centralized Ethics Review
Ronald M. Grant, MD, FRCPC
Pediatric Oncologist
The Hospital for Sick Children, Toronto
Quality Indicators
Nicole Bradley, MHSc (Epidemiology) Senior Healthcare Analyst & Project Manager Pediatric Oncology Group of Ontario (POGO), Toronto
Presentation Description: This workshop offered an examination of instances when conducting research or clinical testing in a pediatric oncology context has yielded unexpected results for a participant, with a particular emphasis on next generation sequencing. What is the science behind the discovery of incidental findings, and what are the associated ethical and legal considerations related to the reporting of these findings? From the viewpoints of a geneticist, bioethicist/oncologist and lawyer, this complex topic was examined.
Speakers: Jan Friedman, MD, PhD
Professor
Department of Medical Genetics
University of British Columbia, Vancouver
Conrad Fernandez, MD, FRCPC, Hon Bsc (Genetics)
Professor and Head
Division of Pediatric Hematology/Oncology
IWK Health Centre
Dalhousie University, Halifax
Ma’n Zawati, LL.B., LL.M.
Academic Coordinator
Centre of Genomics and Policy
McGill University, Montreal
Presentation Description: The moral underpinnings supporting the offer of a summary of research results and how this is being adopted in regulatory guidance was the focus of this presentation, which included a review of the recommendations of the COG return of results task force and current plans for implementation.
Speaker: Conrad Fernandez, MD, FRCPC, Hon BSc (Genetics)
Professor and Head
Division of Pediatric Hematology/Oncology
IWK Health Centre
Dalhousie University, Halifax
