Margaret Keatings, Chief of Interprofessional Practice and Chief Nurse Executive, announces retirement

Margaret Keatings, our Chief of Interprofessional Practice and Chief Nurse Executive, has announced her retirement. Margaret has dedicated her entire career to the nursing profession, including nursing practice, research and education. She joined the Executive Team at SickKids in 2004 after having served in senior leadership and clinical roles at both University Health Network and Hamilton Health Sciences. Margaret has had an impressive impact on SickKids; there has been a steady increase in nursing engagement scores across the organization, RN Council was expanded and Advanced Practice Nursing roles have grown.

In addition to her deep commitment to the nursing profession, Margaret has been a passionate champion for inter-professional practice and education at SickKids where she has both developed and executed an integrated strategy. She is presently working on a strategy to advance the academic mandate of health disciplines.

Family-centred care has also been an important priority for Margaret. She has played a key leadership role in advancing family-centred care at SickKids, where she has enhanced the family advisory committee model and increased the number of families and patients represented on hospital committees and re-designed the patient representative program.

Margaret has led a number of innovative initiatives, including a pilot of nurse practitioner-led clinics for paediatrics and a project with Citizenship and Immigration Canada which has resulted extensive cultural competence training and translation of educational materials for patients and families. This work is now being shared with the broader healthcare community to advance cultural competence across the province.

Academically, Margaret is a recognized leader in nursing and ethics having co-authored the third edition of Ethical and Legal Issues in Nursing during her tenure at SickKids. She is appointed at both the University of Toronto and McMaster University. During her time at SickKids she chaired the CAHO CNE sub-committee during which time they were instrumental in successfully advocating for the New Graduate Guarantee. Margaret also championed the development of RNAO Healthy Work Environment Best Practice Guidelines.

In her retirement, Margaret plans on travelling, renovating her homes and continuing to contribute to advancing nursing and health care both here and abroad.

Formal recognition of Margaret’s many contributions to SickKids will be held in the coming months. I invite you to please join me in congratulating and thanking Margaret as she enters the next chapter of her life.

Kind regards,
Mary Jo

Mary Jo Haddad, CM, MHSc, LLD, BScN
President and CEO The Hospital for Sick Children

National Meeting on Grief and Loss funded by Canadian Institutes of Health Research (CIHR)

The second Grief and Loss Meeting will be held at the The York University Psychology Clinic on Friday February 10th, 2012.

With funding from the Canadian Institutes of Health Research this meeting  continues a cross-national and interdisciplinary conversation on grief and loss including theory, research and practice at York University in Toronto, The Graduate Center and City University of New York.

The intention is to bring together a diverse group of people across professions who normally do not talk to each other to share resources, hear and converse on community and cultural responses to grief and loss and continue a budding cross-national exchange program launched in 2011.

Preliminary Agenda:

Screening of GriefWalker and discussion with Stephen Jenkinson. Griefwalker is a National Film Board of Canada documentary featuring Stephen Jenkinson’s work with dying people. Griefwalker shows Jenkinson in teaching sessions with doctors and nurses, in counselling sessions with dying people and their families. Questions to be explored include: Where does our culture’s death phobia come from? Is there such a thing as good dying? How is it that grief could be a skill instead of an affliction? How can seeing your life’s end be the beginning of your deep love of being alive? See http://www.orphanwisdom.com

Panel on cultural and community responses to grief and loss will include talks by:

Kate Kenny from South Riverdale Community Health Centre speaking about the Grief and Loss Education and Action Project focusing on women’s experiences of grief and loss following custody loss.

Lynn Lavallee from Ryerson University speaking on the Normalization of Death and Dying: A Story of the Generational Impacts of a Métis Family.

Mary Ellen Macdonald from McGill University speaking on Grief Online: How virtual memorialization may be changing concepts of childhood death and parental bereavement.

Registration costs $30. Spaces are limited and people will be enrolled on a first come first serve basis. You must register in advance in order to attend the meeting. RSVP to griefandlossproject AT gmail.com

Bioethics week Nov 7-11 - flyer of events

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.  

• 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.

Are you still sad? By Valerie McDonald

Here is a lovely reflection on bereavement rituals or, as the author describes them, memory traditions.

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.