Palliative expert panel - myths surrounding paediatric palliative research

"What are the biggest myths surrounding research?" was the expert panel focus, moderated by Maria Rugg, former SickKids Advanced Practise Nurse to the Palliative and Bereavement Service, now seconded to the Office of the Chief Coroner of Ontario. The panel comprised of:

Elizabeth Peeters, b.r.a.i.n child president, member of SickKids Research Ethics Board, grieving mother and sibling

Dr Christine Newman, SickKids Palliative and Bereavement Care Service

Dr Adam Rapoport, Palliative Care Consultant, Max and Beatrice Wolfe Children's Centre

Randy Zlotnik Shaul, SickKids bioethicist


Maria: "Is it fair to ask families to participate in research?"

Zlotkin Shaul: It is "fair and reasonable to offer parents the opportunity."

Rapoport: It is "unfair not to".

Newman: Asking families "should be mandatory...I see five families here who have helped me."

Elizabeth: "To not get chance for research is taking away our choice. We don't have a lot of choices."


Maria: "What are the biggest myths surrounding research?"

Rapoport: "That there is nothing to be gained by the (palliative) individual."

Newman: "That families are too vulnerable... They are often the strongest patients."

Elizabeth: "That families have too much on their plate; let us make the decision!"


Maria: "When is the right time to speak"

Rapoport: "When we chose 3 months it was more for the REB; we want to capture info as closely as possible."

Newman: "Waiting equals protectionism, you are never over it. We want real time info. Parents can decide."

Zlotkin Shaul "Problem perhaps in that REBs not part of the wider conversation. Help educate REBs so you are on the same page; if you have better data please share with them."

Maria: "Its important to see that it's not 'them', it's all of us."


Maria: "What are the next steps?"

Elizabeth: how death effects the wider family

Newman: more work on siblings, push back during the palliative phase, include the voice of the child, starting to see inutero palliative care, look at myths to debunk, work with REBs on the time barrier to enter a study after the child's death

Rapoport: descriptive studies ok, now need more experimental designs and head to head trials otherwise we are researching hospital silos

Zlotkin Shaul: an interesting model was a summer camp with senior researchers on pregnant women who took a week to meet and brainstorm challenges with research and with REBs

Nurse comment: expand to rural areas too!

Jonathan: not being asked about Sasha's death afterward felt bizarre

TRAC-PG palliative and grief research

On September 24th we reported to a TRAC-PG retreat on the website's progress - I love how such detailed and lengthy interdisciplinary meetings are called "retreats". In the time since we knew Sasha was dying, the palliative service at SickKids have given generously of their time. Laura Beaune heads up palliative research efforts and has been our website contact person. With Andrea Wheat, Laura has faciliated and guided our journey in Sasha's memory to help support families and Interprofessional Practise. The first website formulation included a public and member site for TRAC-PG, blog for families and private discussion boards for patients, families and their care team. The discussion board idea is of great interest, a place where parents can record daily events whether at hospital or in the community with input from all disciplines (on a non-emergency basis). When SickKids IT staff shared their plans to offer family blogging tools (SickKids Care Pages have now been launched) and was overhauling their entire web CMS to allow parent recording we put the blog and forum on hold. After almost a year of planning, we are eager to move onto the design and then the build phases for a TRAC-PG website that describes the full range of projects with Member areas and Comment feedback and attention to resources for Patients and Families, Clinicians and Volunteers and Policymakers and Researchers.

And what is TRAC-PG you might ask? Team for Research with Adolescents and Children in Palliation and Grief (TRAC-PG) comprises interdisciplinary clinicians and clinical researchers from hospitals, academic and community settings focused on evidence based paediatric palliative care research. TRAC-PG emerged from a research interest group within SickKids Research Institute’s Child Health Evaluative Sciences (CHES) in 2003 by Dr. Beverley Antle (read more about this Canadian inspiration behind palliative and family-centred research), Dr. Maru Barrera and Laura Beaune to collaborate and develop a cohesive program of psychosocially based research to further understand the living, dying and bereavement experience of children with life threatening illnesses and their families. TRAC-PG aims to generate new knowledge and integrate evidence based, family-centred palliative care across the health care systems. TRAC-PG's research focus aims to provide real data to support the call for expanded palliative services as research is vital to impliment initiatives in a healthcare setting. It is simply not enough to have anecdotal evidence that normalizing palliative and bereavement services is good for patients and families. In supporting the growth of paediatric palliative care programs I really could not have chosen a more vital and impactful group to volunteer with; it also warms my heart that among the dozen professionals at the meeting, five cared for Sasha directly.