Presentation Description: For many, the image of end-of-life care includes a patient in a hospital bed receiving medication. While this may be one possible scenario, it is by no means the only one, nor should it be the model. At end-of-life, support for the child, family and care providers is imperative, in order to meaningfully affect the dying process, legacy of the child and coping strategies after death for all included.
This presentation provided an overview of pitfalls, tools and strategies in supporting children, their families and their care providers at the end of life.
Speaker:
Kevin Weingarten, MD, MHSc, FRCPC
Staff Haematology/Oncology & Palliative care
The Hospital for Sick Children
Presentation Description: Despite improvements in survival rates, cancer remains the leading cause of disease-related death in childhood. Research indicates significant symptom burden and suffering among children who die of cancer, as well as barriers to the provision of pediatric palliative care. In these cases, communication and decision making are vitally important to families and healthcare providers when a child cannot be cured. Novel approaches to working with families regarding advanced directives and decision-making are highlighted.
This presentation provided an overview of some of the challenges experienced by healthcare providers and families of children near the end of life.
Speaker: Cynthia A. Gerhardt, PhD
Director, Center for Biobehavioral Health, The Research Institute at Nationwide Children’s Hospital,
Associate Professor of Pediatrics and Psychology, The Ohio State University, Columbus, OH
Presentation Description: Using a case based approach, this interactive workshop discussed the challenges children and their families, healthcare providers, and the healthcare team face in the setting of relapsed disease. This workshop discussed eliciting parents’ definition of “being a good parent to my very ill child” and using this to inform care. Conversely, the assembled group examined the clinician’s definition of “being a good doctor/nurse/provider to this very ill child”, and how this compares and contrasts with what patients and parents value. This session explored what happens to the family and family dynamics at the time of diagnosis or relapsed disease. In addition, team dynamics (internal and external) during times of crucial decision-making and conflict were explored. Conceptual clarification of palliative care and end of life care were discussed along with tools for incorporating this into our communication with families and health care providers, and in our decision-making.
Andrea Frolic, PhD Director, Office of Clinical & Organizational Ethics, Hamilton Health Sciences, Hamilton
Assistant Professor, Department of Family Medicine, McMaster University, Hamilton
Shayna Zelcer, MD, FRCPC Staff Physician, Paediatric Hematology/Oncology
Children’s Hospital, London Health Sciences Centre
Associate Professor, Department of Paediatrics
Schulich School of Medicine and Dentistry
Presentation Description: This workshop examined the potential significance of religion and culture for decision-making about end of life care and how patients’ and families’ views on health care are sometimes shaped by their religious beliefs and/or cultures. This interactive, case-based workshop investigated these complex issues from the perspectives of a psychiatrist and palliative care physician, a spiritual advisor and a bioethicist.
Speakers: Pamela Mosher, MD, M.Div, BSc Assistant Professor, Department of Psychiatry
University of Toronto
Staff Psychiatrist, Consultation-Liaison Psychiatry Service
The Hospital for Sick Children
Gerardo Quintanar, BA (Ph), PhD (Th) Manager Spiritual Support Services, Children Hospital of Eastern Ontario
Randi Zlotnik Shaul, JD, LLM, PhD Director, Bioethics Department
The Hospital for Sick Children
Note: POGO was not granted permission to share Dr. Randi Zlotnik Shaul’s slides
Presentation Description: Families of children with cancer may turn towards complementary therapies at end of life. Using case studies and a review of the latest evidence, this workshop highlighted some of the possible benefits of complementary therapies in managing symptoms and distress at end of life for both patients and family members. The workshop also touched on some of the challenges that families and health professionals face when decisions about complementary therapies are made in the face of limited conventional treatment options. The importance of open and respectful communication as well as shared decision making were discussed.
Speakers: Lynda Balneaves, RN, PhD Director, Centre for Integrative Medicine
KY and Betty Ho Chair in Integrative Medicine
Associate Professor, Faculty of Medicine and Leslie Dan Faculty of Pharmacy
Scientist, Princess Margaret Cancer Centre
Elena J. Ladas, PhD, RD Assistant Professor of Nutrition in Pediatrics and in the Institute of Human Nutrition
Columbia University Medical Center
Co-Director, Center for Comprehensive Wellness
Division of Pediatric Hematology/Oncology/Stem Cell Transplant
