There are some very interesting presentations at SickKids Bio-Ethics week running Nov 7-11.
Please check out the flyer of events for more details.
NICU retreat brings together parents from Sunnybrook, Mount Sinai and SickKids
Tri-Hospital Parent Advisories
“Best Practices for Our NICUs”
Saturday, November 5th 2011
Sunnybrook Hospital, 2075 Bayview Avenue
8:00 – 9:00 Breakfast
9:00 - 9:30 Welcome and introductions
9:30 - 10:00 "Beyond "Giving Back": Lessons Learned by Veteran Parent Volunteers" - Frank Gavin founded the Canadian Family Advisory Network (CFAN) and currently serves as CFAN's National Liaison.
10:00 - 10:30 “Peer Support: the important role”, Mt Sinai
10:30 - 11:00 coffee break
11:00 - 11:30 “Getting to Yes: family and staff partnerships at Sick Kids NICU”, SickKids
11:30 - 12:00 “The effectiveness of a Paid Parent”; Sunnybrook
12:00 - 12:30 Lunch with speakers Dr. Diambomba, Mount Sinai & Dr Ng, Sunnybrook
12:30 - 1:00 Group discussion/wrap up
For more information or if you are interested in attending (spots are limited) please contact Kate.Robson AT sunnybrook.ca
Janis Purdy and I will share activities at SickKids' NICU family council and we look forward to a good learning and networking opportunity for parents and staff focused on patient and family engaged care in the Neonatal Intensive Care Unit.
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.
Valerie McDonald, bereaved mom and SickKids staff educator and volunteer added her highlights.
- 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.
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.
- 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?
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
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.
Are you still sad? By Valerie McDonald
Here is a lovely reflection on bereavement rituals or, as the author describes them, memory traditions.
Valerie McDonald is a former chair of SickKids family advisory council who also volunteers time to speak on palliative support and policies and assist with the research selection committee of TRACPG which the Sasha Bella Fund supports. This reflection is reprinted from the TRACPG's summer 2011 newsletter.
Someone asked me recently if I am still sad about the death of my daughter, Natalie. I was surprised by the question and even a little offended. Of course I’m still sad, but when I stopped to reflect, I realized that the sadness has changed in the nearly 12 years since she died.
Natalie was our middle child—the organizer, instigator and peace-maker between her two sisters. She died when she was 9 years old after being treated for leukemia for two and a half years. We had no idea how to carry on without her lively spirit in our family. When she died, we not only lost Natalie, we also abruptly lost the support of most of the health care providers who had cared for her and for us over many years. It was other parents who taught us most about how to cope with that shattering sorrow.
From our friends, we learned to celebrate our lively girl and include her in our lives. Every year, on her birthday, we invite her cousins and best friends to share her favourite meal of Fettuccine Alfredo and rhubarb cake. We can’t give gifts to Natalie, so we give them to our guests instead. At Christmas, Santa still fills her stocking along with those of the rest of the family. On her “Death Day” (inspired by Nearly Headless Nick, Natalie’s favourite Harry Potter ghost), we have a tradition of talking about how we can each do something to make our family better without Natalie.
During the first few years, each of these occasions was an unbearably sad reminder of her death. But gradually, we began to look forward to these remembering-Natalie-traditions. But the first time her best friend couldn’t attend a birthday party, I was devastated. It felt as though some part of Natalie had died all over again.
Then another wise friend reminded me that a 16 year old would likely not have had a family birthday party and might even have outgrown Fettuccine Alfredo. I realized that our remembering-Natalie-traditions could also grow and change, just as she would have done.
On the first Death Day that our family could not be together, we decided that each of us would draw a picture in honour of Natalie, who was a talented and prolific artist. The forced change in tradition encouraged us to explore her passion ourselves and to try something that she loved. Death Day was once the saddest day of the year. But now it is a day of art and creativity.
This past March, we celebrated her would-have-been twenty-first birthday. After living for nearly 12 years without her, yes, I am still sad. But after nearly 12 years, there is space to remember and celebrate the gifts she gave us that continue to enrich our lives.
Valerie McDonald is a former chair of SickKids family advisory council who also volunteers time to speak on palliative support and policies and assist with the research selection committee of TRACPG which the Sasha Bella Fund supports. This reflection is reprinted from the TRACPG's summer 2011 newsletter.
SickKids 2011 Paediatric Palliative Care Research Symposium
On October 5 2001, the national Team for Research in Adolescent and Childhood Palliation and Grief hosts SickKids third annual pediatric palliative research symposium.
The keynote and Special Grand Rounds Guest Speaker is Dr. Joanne Wolfe, Division Chief of Pediatric Palliative Care in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute and Director of Palliative Care at Children's Hospital Boston.
The symposium themes include promoting palliative care at diagnosis of a life threatening illness among the circle of care and family engagement in research.
The full agenda includes Grand Rounds, expert panel, workshop, poster session and parent breakout, Café Scientifica — a workshop of 5 minute presentations on the current state of (exciting) research in pediatric palliative care - and a break out session for parents to connect and a town hall event.
Parent registrations are complimentary and here is the symposium summary from the temporary event website:
This third annual Paediatric Palliative Care Symposium will focus on themes related to: addressing the issues of early integration into palliative care, how to approach parents to participate in research in palliative care, and more.
Highlights will include our Grand Rounds key note speaker, Joanne Wolfe, from Boston Children's Hospital, oral and poster presentations by TRAC-PG scientists and clinicians, an expert panel debate regarding the successes and challenges to providing hospital based palliative care to children and a workshop/panel discussion with parents and health care providers.
This symposium is open to parents, family members, SickKids and community clinicians and researchers, volunteers and decision makers. Parents will have the opportunity to participate in this symposium with other parents who have shared interests in networking, supporting each other, research, volunteering, and philanthropy.
Optimizing Patient Safety Through IT Solutions: A Case Study
David Mosher presented to SickKids Patient Safety Symposium a personal case study titled "Optimizing Patient Safety through IT Solutions" based on his experience as the father of a child with complex care needs and a parent volunteer on SickKids family council and as a health care expert tasked with large scale mobile health care initiatives.
David describes his daughter as complex medically both in needs and in treatment concerns.
She also has an extremely wide circle of care extending to more than 10 sites at more than 5 different institutions.
As a father and IT professional, David then offers research and thoughts as to how technology adoption will improve the quality of information at the heart of patient safety.
David, thanks for sharing your presentation with us and for contributing to patient safety and family centered care at SickKids.
David describes his daughter as complex medically both in needs and in treatment concerns.
She also has an extremely wide circle of care extending to more than 10 sites at more than 5 different institutions.
As a father and IT professional, David then offers research and thoughts as to how technology adoption will improve the quality of information at the heart of patient safety.
Quality Information is Critical to Patient Safety
• “The majority of the key informants believed that the fundamental issue in patient safety and primary care is patient care information.”
(Kinston-Reichers et al., Cdn Patient Safety Institute)
• “During 32% of ER visits, missing information delays care”
(Stiell et al., 2004)
Increased Patient Safety Risk Factors
Can my wife and I get the answers right when under extreme stress?
What if we’re not there?
Very complex medical history/rare condition
My child cannot provide verbal feedback
Outbursts increase clinician stress, distracts and interrupts communication
Electronic Health Records are part of the solution
An E.H.R. provides a cross-provider, trusted healthcare record
But……….
• Is the info accessible at the point of care?
• Does it slow down the treatment process in E.R.?
• Is the information used to its potential?
Next Generation Mobile Devices Overcome the Access Barrier
- Light
- 10 hour battery life
- Intuitive user interface
- High resolution
- Built in cameras
- WiFi and 3G/4G
- Secure (no patient data on the device)
- Fast application deployment
Mobile Device Adoption is an unstoppable force in Healthcare
Clinical adoption of mobile devices is rising
• 72% of US Physicians use smartphones (Manhattan Research 2010)
• 52% look up patient information several times a day (Manhattan Research 2010)
• 50% of US physicians will have iPads by 2012 (Chilmark Research)
• 70% of Healthcare respondents plan to buy an iPad or similar device in the next year (HIMSS/BoxTone 2010 CompTIA 2010)
• 86% of Physicians with smartphones are interested in accessing EMR data by them (PwC 2010)
Conclusion
• The right information being available at the right time is crucial to patient safety
• E.H.R.s must be combined with mobile devices to have a meaningful impact
• IT can reduce the likelihood of errors that outside factors could introduce
David, thanks for sharing your presentation with us and for contributing to patient safety and family centered care at SickKids.
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