Palliative Research Symposium with Dr Joanne Wolfe - October 5, 2011

The third annual Paediatric Palliative Care Symposium focused on early integration of palliative care and family participation in palliative research and included a focus group, a participatory exercise to prioritize research priorities and a Cafe Scientifica of current TRAC-PG studies.

Grand Rounds keynote
The Grand Rounds keynote and special guest was Joanne Wolfe, MD, MPH and Director of the Pediatric Palliative Care at Children's Hospital Boston and Division Chief of the Pediatric Palliative Care Service Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute. Dr Wolfe's research focus on palliative care uses clinical trials to evaluate care approaches that preserve hope and optimize quality of life and comfort. The symposium was supported by CDP, SickKids Foundation and the Sasha Bella Fund at  the foundation. Thanks to Frank Gavin for sharing notes on Dr Wolfe's Grand Rounds presentation.  
  • One of the studies she referenced showed, as did one of the studies mentioned in last year's Grand Rounds presentation, that there is little or no real difference in what parents in different countries value and are concerned about in relation to palliative care.
  • Another study showed that questions/issues related to communication are the ones that parents care most about while the professionals were more focused on such matters as the timing or appropriateness of interventions. She also mentioned that parents, unlike the professionals, were not much concerned with privacy/confidentiality. The factors parents listed to rate good care included relationships, information, communication and preparation for death, compared to physicians who listed pain, length of hospitalization. These issues were verified in our small group discussion with parents.
  • One study she mentioned asked a number of children with life-threatening conditions about how frequently they experienced pain and (I think) how severe the pain was and found that none of those who said they had experienced pain had received treatment for pain. She stressed how unacceptable this was.
  • She mentioned the study that found that a particular group of adults who received palliative care actually lived longer than a comparable group who did not receive palliative care, but she cautioned that "it's just one study."
  • She interwove a number of stories of particular patients and families--with pictures--into her presentation. What stood out was the uniqueness of each situation, the impossibility of generalizing about what are the "right decisions," and the unreliability of many of the predictions that were made by doctors about how long the child would live, what the child's life would be like, etc. 
Valerie McDonald, bereaved mom and SickKids staff educator and volunteer added her highlights.
  • Suffering: she equated it with a threat to the integrity of a patient’s life and is different for everyone.
  • Decision-making: it is important to help with decision-making. In one study of pediatric cancer patients with 30% chance of success the majority opted for cancer therapy and most regretted it later. For young people making decisions about End of Life care, relationships with others are key.
  • Planning location of death led to more deaths at home, fewer in ICU and families felt better prepared.
  • Dr Wolfe's Pediquest Study collected symptoms and quality of life reports from families electronically, including children, and these reports helped children speak with doctors, helped parents understand how children were feeling, helped providers understand psychosocial aspects and helped them talk to families.
  • Name: Boston Children’s calls their palliative care team the Pediatric Enhanced Care Team; debate ensued…
  • 5 Cardinal Questions for PedPall providers: 1. Tell us about the child as a person 2. What is your understanding of the illness 3. What it most important to you, your child 4. What are your hopes? 5. What are your worries?
  • One question I was left with at the end (it was debated somewhat) was—is it better to have a separate palliative care team or should palliative care be integrated as a treatment modality?
The keynote was followed by a focus group that included a bereaved mom and dad. Then the lead researcher on current TRAC-PG study reviewed their teams work. Several of these studies were partly funded by the Innovation Fund for pediatric palliative research supported by the Sasha Bella Fund including a study that I am participating on for the first time about Father's Experiences with Parenting and Grief. Here are slides Laura Beaune presented. Laura and Dr Christine Newman, when asked how the fund could most help palliative care delivery at SickKids suggested the research support focus.

Building Conscensus on Research Priorities
Participants then broke into groups to brainstorm research priorities and a parent group was facilitated by Valerie with Joanne writing our ideas on flip chart paper and having an opportunity to meet and share stories. From the questions, the strongest themes were:
  • Peer support: its role in palliative and bereavement care; what are barriers and best practices? 
  • Communication: who talks to families, who most trusted/experienced, when, how; communicating with conflicted families and extended families 
  • Provider education: what role can families play in hospital education? 
  • Financial impact of chronic illness and lengthy hospital visits
  • Integrating supports across the continuum of care: quality support in urban and rural centers and homes 
Dr Wolfe was surprised that pain control and suffering wasn't on the SickKids' parent list though it often features in family accounts.

Poster Presentations & Café Scientifica

Welcome and introductions by Dr. Christine Newman (Palliative Care physician, SickKids)

1) Laura Beaune, David Nicholas, Maru Barrera, Mark Belletrutti,, Jonathan Blumberg, Stanley Ing, and Mathew Milen.  Fathers’ Experiences with Parenting & Grief: Unique Considerations in Caring and Research in Palliative Care

2) A Thompson, K Miller, J Crossenbacher, Maru Barrera, B Compas, B Davies, D Fairclough, MJ Guilmer, N Hogan, K Vannatta, & C Gerhardt.  Multiple Perspectives of Bereaved Children’s Emotional and Behavioral Adjustment after a Sibling Death from Cancer

3) Kimberley A. Widger,  Ann E. Tourangeau, Room for Improvement: Mothers’ Perspectives on Children’s End-of-life Care

4) Ceilidh Eaton Russell, Kimberley Widger, Maru Barrera, Laura Beaune, Susan Cadell, Adam Rapoport Maria Rugg, Rose Steele, "Sibling’s Perspectives: Toward a Better Understanding of their Involvement with a Dying Child"

5) Barbara Muskat, Samantha Anthony, Laura Beaune, David Brownstone, Pam Hubley, Dr. Christine Newman, Dr. Adam Rapoport. “Experiences and perceptions of paediatric health-care professionals providing end-of-life and palliative care”

6) Susan Cadell, Bluthardt, C., Betty Davies., Hemsworth, D., Stephen Liben., Hal Siden,  Rose Steele. & Lynn  Straatman.  “Elation” and “Grief”: Illustrating how the Positive and the Negatives Co-exist for Parents of a Child with a Life-Limiting Illness.

7) Rose Steele, Hal Siden, Rollin Brant, Susan Cadell, Betty Davies, Lynn Straatman, Adam Rapoport & Gail Andrews . “Charting the Territory: Symptoms in children with degenerative, life-threatening conditions”

8) Adam Rapoport, S. Lawrence Librach, Giovanna Sirianni, Amna Husain. “Not just little adults: Palliative care physician attitudes towards providing care for pediatric patients.”

9) Deborah Tomlinson, Pamela  Hinds, Ute Bartels, E, Hendershot , Lillian Sung. “Parents can Sensitively Report Determinants of Quality of Life for Children with Cancer Receiving Palliative Care”.

10) Laura Beaune, David Nicholas, Susan Cadell, Cindy Bruce-Barrett.  Pandemic Planning: Developing Consensus towards a National Planning Guide for Hospital Based Pediatric Palliative Care programs”.

11) Adam Rapoport, Rose Steele, Maria Rugg, Christine Newman. “Parental perceptions of forgoing artificial delivery of nutrition and hydration during end-of-life care for their children.”

Authors who are members of TRAC-PG: Laura Beaune, David Nicholas, Maru Barrera, Kimberley A. Widger, Ceilidh Eaton Russell, Susan Cadell, Adam Rapoport Maria Rugg, Rose Steele, Deborah Tomlinson, Lillian Sung

Suddenly "I" Was "Them" - when the baby of a bioethics director is admitted to the NICU by Felicia Cohn

Suddenly, I was a “them.” The moment that should have been the most joyous in my life became the most tragic. In the shift from health care professional to mother of a critically ill newborn, I learned things that redefined both my life and my professional identity. Never before had the “us vs them” divide been so clear. I had worked in the “us” role for years and was comfortable and confident in my ability to understand “them.” I knew that health care professionals were supposed to be powerful, authoritative, and knowledgeable. Families, I knew, were supposed to be vulnerable, dependent, and fragile. I thought that I was able to bridge that divide pretty well. With the birth of my child, Amanda, I became a “them.” In that moment, I was thrust into the role of the NICU mother. I had long sympathized with and supported such mothers. I could now truly empathize with those parents whom I had witnessed standing helplessly next to the small bassinets in the most technological of settings, crying many tears and uttering daily prayers of healing and thankfulness for modern medicine. When it was my own baby, I tried to draw on all that I had learned and taught in my role as a bioethicist. My experience provided little solace. My knowledge base failed me. From this experience, I have come to understand the world of the patient and the limits of empathy. I continue to struggle with three questions that my daughter’s illness occasioned all too personally: the nature of the questions physicians pose to our patients/families; the reliability of the informed consent process; and the just allocation of health care resources.
Read full article (PDF). Thanks to Janis for sharing with NICU's Family Centered Care Committee at SickKids.