About CaringTogether.life
CaringTogether.life (CTL) is a safe place for families who are caring for a seriously ill or dying child to find information they can trust. It is also a valuable resource for healthcare providers who are supporting children and their families. It was developed by family members with lived experience and pediatric palliative care specialists to fill a gap in online content. It includes articles and videos by pediatric palliative care specialists and stories by families. It brings together resources from regional, national, and international sources to meet the very specific needs of families. There is also a list of national and regional programs and services. All information has been reviewed by palliative care specialists to ensure it is information you can trust.
A note about language
For content flow, the term “family” is used to encompass all those in the person’s care network or who may be impacted by the person’s death. Similarly, the term “patient” is used throughout to refer to the person who is seriously ill or dying. It is a fundamental tenant of quality palliative care that clinicians see the patient as a person first and foremost.
Developed by
Canadian Virtual Hospice is the world’s most comprehensive online portal for information and support on advanced illness, palliative care, and grief. It serves the information and support needs of people living with advanced illness, families and caregivers, health providers, researchers, and educators: Canadian Virtual Hospice also operates: VirtualHospice.ca, PortailPalliatif.ca, MyGrief.ca, MonDeuil.ca, LivingMyCulture.ca, LivingOutLoud.life, vivreAfond.ca, Methadone4pain.ca, KidsGrief.ca, DeuildesEnfants.ca, MyGriefToolbox.ca, MesOutilsDeuil.ca, and ICUGrief.ca, and is active on numerous social media platforms.
Funding for CaringTogether.life was provided by
Production of CaringTogether.life has been made possible through a financial contribution from Health Canada. The views expressed herein do not necessarily represent the views of Health Canada.
Development team
Project leads
Adam Rapoport MD, FRCPC, MHSc
Medical Director, Paediatric Advanced Care Team (PACT),
The Hospital for Sick Children, Emily’s House Children’s Hospice
Carla Garrett
Bereaved parent
Author of My Love Will Follow You There
Woodstock, Ontario
Writers
Ceilidh Eaton Russell MSc, CCLS
Certified Child Life Specialist
Director, Research and Evaluation
Dr. Jay Children’s Grief Centre
Cindy Van Halderen MSW, RSW
Social Worker
Shelley Hermer MSW, RSW
Social Worker, Peterborough Regional Health Centre
PhD Student,
Trent University
Peterborough, Ontario
Dave Lysecki MD, FRCPC
Head, Quality of Life & Advanced Care,
McMaster Children's Hospital & Pediatric Palliative Medicine,
McMaster University
Hamilton, Ontario
Valerie McDonald MSW
Writer and Editor
Toronto, Ontario
Shari Morash BIS
Author, Educator
Guelph, Ontario
Christine Newman MD, FRCPC
Assistant Professor, Pediatric Medicine,
University of Toronto
Family advisors and contributors
Kazumi Alsemgeest
Brenda Campbell, MB
Darren Connolly
Damon Dagnone, ON
Jenny Doull, ON
Richard DuBois, NS
Geeta Dyal
Emma Gofton, ON
Steve Guiler, ON
Marie Hunt
Jeffrey Jia, BC
Christine Jones, ON
Susan Kuczynski, ON
Mélanie Limoges, QC
Dana McLean, ON
Kim McLeod
Salma Moftah, AB
Bronagh Morgan, ON
Esther Schultz, MB
Anette Tate, NS
Tara Weston, NB
Maria Wishart, ON
Danielle Zucchet, ON
Pediatric palliative care advisors
Shaindy Alexander BA, CCLS, M.Sc (C)
Community Psychosocial Support, Certified Child Life Specialist
Paediatric Advance Care Team (PACT) / Pathways Grief Support Program
The Hospital for Sick Children
Toronto, Ontario
Lysanne Daoust RN M.Sc.
Clinical nurse in pediatric palliative care
CHU Sainte-Justine, Montréal, Québec
Johanne Desrochers
Executive Director (Ret.), The Lighthouse Children and Families
Clare Freeman CYW, BA, MSW, RSW
Executive Director, Dr Bob Kemp Hospice & Bereavement Services
Hamilton, Ontario
Kira Goodman RN, BScN, MBA
Project Manager, Paediatric advanced care team, SickKids
Toronto, ON
Stephen Liben MD
Director, Programs in Pediatric Palliative Care,
The Montreal Children's Hospital
Montreal, Quebec
Robin McClure, MD, CCFP(PC)
Physician, WRHA Adult & Pediatric Palliative Care Program
Lecturer, Department of Family Medicine,
Rady Faculty of Health Sciences, University of Manitoba
Member, Section of Child Health,
Rady Faculty of Health Sciences, University of Manitoba
Winnipeg, Manitoba
Rachel Neufeld MN, CHPCNc, NP(F)
Nurse Practitioner, Canuck Place Children’s Hospice
Abbotsford/Vancouver, British Columbia
Lisa Pearlman RN(EC) MN ACNP NP
Nurse Practitioner
Children’s Hospital Western Ontario,
Department of Pediatrics,
Department of Family Medicine Schulich School of Medicine and Dentistry
London, Ontario
Marli Robertson MBChB FRACP (Retired)
Clinical Associate Professor, Department of Pediatrics, Cumming School of Medicine, University of Calgary
Medical Director, Children’s Hospice and Palliative Care Service,
Rotary Flames House, Alberta Children’s Hospital
Calgary, Alberta
Gurjit Sangha RN BSc MN CHPCN(C)
Paediatric Palliative Care Facilitator, Trillium Health Partners
Adjunct Professor, University of Toronto
Mississauga, ON
Hal Siden MD, MHSc, FRCPC
Medical Director, Canuck Place Children's Hospice
Clinical Division Head Palliative Care and
Research Institute Investigator,
BC Children's Hospital
Clinical Professor, Department of Pediatrics
University of British Columbia
Megan Sloan RN BScN MA
CHEO
Ottawa, Ontario
Simone Stenekes RN MN CHPCN(C)
Clinical Nurse Specialist, Pediatric Palliative Care
- Winnipeg Regional Health Authority Palliative Care Program
Winnipeg, Manitoba
Christina Vadeboncoeur MD, FRCPC
Founder Palliative Medicine
Medical Director, Palliative Care Program, CHEO and Roger Neilson House
Associate Professor, uOttawa
Ottawa, Ontario, Canada
Kimberely Widger RN, PhD, CHPCN(C)
Associate Professor and Tier 2 Canada Research Chair
- Pediatric Palliative Care, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto
Nursing Research Associate, Paediatric Advanced Care Team, Hospital for Sick Children
Adjunct Scientist, Lifespan Program, ICES
Toronto, ON
Shauna Wilcox RN, MN, CHPCN (C)
Clinical Nurse Specialist, Pediatric Advanced Care Team (PACT), IWK Health Centre
Halifax, Nova Scotia
Robin Williams MD, FRCPC (Pediatrics, Palliative Medicine)
Palliative Medicine Specialist, Horizon Health Network
Saint John, New Brunswick
Disclaimer and privacy
CaringTogether.life provides general guidance for parents and other caregivers on supporting, caring for, and talking to children about serious illness, dying, death and grief. This information is not meant to replace professional services. Individuals who use this content do so by their own choice. While care has been taken to ensure that this course reflects the state of general knowledge and expert consensus about pediatric palliative at the date of publication, Canadian Virtual Hospice does not make any warranty or guarantee in respect to any of the contents or information in CaringTogether.life nor accept responsibility or liability whatsoever for any errors or omissions, regardless of whether those errors or omissions were made negligently or otherwise. For further information, view our Privacy Policy and Legal Notices. For further information, view our Privacy Policy and Legal Notices.