A snapshot of the fundraising needs for paediatric palliative care at one Toronto centre of excellence

The Sasha Bella Fund for Family-Centred Care focuses our efforts on raising funds for SickKids Hospital for family-centred, interprofessional and palliative initiatives to help SickKids nurses, doctors and allied professionals continue to evolve advanced models for family communication. We think this is the best way for us to direct Sasha's experience to support other kids and care teams. We offer a parallel track to the highly successful large scale fund raising for expensive new equipment and research. While our focus is supporting critical 'soft' processes within SickKids Hospital we will forever be grateful for the sensitivity and expertise at The Temmy Latner Centre who, working with SickKids Hospital, organized a multi-disciplinary care team for Sasha in the community so that we could bring her home. Here are figures provided as of September 2007 by Temmy Latner Centre sharing the scope of the fundraising needs. All figures relate to The Max and Beatrice Wolfe Centre for Children’s Grief and Palliative Care.

Number of grief and paediatric palliative care referrals since May 2006: 136
Number of grieving or terminally ill children and their siblings supported since May 2006: 263
Number of community presentations since May 2006: 140
Number of classmates of grieving or terminally ill children seen so far this school year: 350
Number of people who did this work: 6
Number of new dollars needed to hire a counsellor skilled in children’s grief and palliative care: $80,000
Number of new dollars needed to develop and distribute education material: $10,000
Number of new dollars needed to buy equipment for teens to film their stories, for and about their families: $5,000
Number of new dollars needed to buy a years worth of journals and activity books for kids and teens: $2,000
Number of new dollars needed to fund a week long multi-media arts camp for kids and teens in The Unicorn Room: $3,000
The chance to make all of this available to the next child who needs us:

SickKids Interprofessional Practise Week and Sasha

SickKids Hospital will hold their first IPP (Interprofessional Practise) Week from November 12 to November 16 and it is an important milestone for SickKids. The Sasha Bella Fund for Family-Centred Care is proud to help sponsor this initiative. Since 2005, Bonnie Fleming-Carroll and Natasha Brownrigg have been working on SickKids IPP, resulting in concerted effort to discuss, map and address IPP challenges. In January 2006 I picked up a copy of the IPP update and it gave me a good introduction to communication challenges across the hospital and got me thinking about family-team communication. For Bonnie, Sasha was one of the inspirations of IPP week as she wrote to us in an email: "we should dedicate the whole day (Nov. 12th) to Sasha Bella. Sasha Bella and your family's experience is a key reason for the day". As Ron Laxer wrote in the second newsletter reporting on SickKids IPP work: “At the heart of the IPP model is an intent to ease the journey of both patients and families through the care process. We need this kind of model to promote and support the practices of family-centred care.” (see all of SickKids IPP newsletters to date on the right side of this blog - thanks Natasha).

I invite friends of the Sasha Bella Fund to join me at 8am on November 12, 2007 in the Main Auditorium (Hollywood Theatre) to launch the first IPP week at SickKids Hospital. I will offer some thoughts on Sasha's experience and IPP; see also the SickKids IPP week calendar of events. Parents and kids take for granted that everyone on the team is sharing information and coordinating care efficiently however IPP requires ongoing focus and committment. As the document states: "Promoting effective inter-professional collaboration in the delivery of health care in Canada has become a national priority based on evidence that it may contribute to improved teamwork and collaboration, increased job satisfaction, and a reduction in patient morbidity." Effective IPP is also critical to effective Family Centred-Care.

Pediatric Patients Receiving Palliative Care in Canada

A multicenter review of 8 dedicated pediatric palliative care programs in Canada, published in Archives of Pediatric and Adolescent Medicine in June 2007, estimates that nationally "between 5% and 12% of the children who could benefit from palliative care received services" and concludes that "Pediatric palliative care programs in Canada care for a diverse population of patients with a wide range of age and disease conditions. Only a small percentage of children who die, however, receive services from these dedicated programs." The review is based on 317 children cared for during 2002 and 2003. Over the last three years, hard work and determined communication have raised these numbers, there are now 4.5 palliative care professionals at SickKids Hospital and referrals are up. We are however still far from normalizing palliative care access to families early in the care of kids with long term or severe health challenges. Thanks to Maria Rugg at SickKids Hospital, one of the study's co-authors, for pointing us to this report.

Death's opposite

I had carried Mia from the bath to our bed and she was scrambling over the duvet and pillows, propelling herself up the piles of pillows and reaching up the headboard when Mom came up: "I was watching videos of Sasha in the last weeks and she looked so sad. She looked confused; she was not happy." Through my tears, Sasha's little sister purposefully and happily stroked Cat and purred herself.

25 years today, a small plane crashed in the Andes. After two months, two of the survivors set out on a final effort to get help. Walking in jeans and sneakers, one of the party recalled the moment he crested a 17,000 foot peak, expecting to see lush green valleys and instead saw ice and snow as far as the horizon:
"I don't know how long I stood there, staring. A minute. Maybe two. I stood motionless until I felt a burning pressure in my lungs, and realized I had forgotten to breathe. I cursed God and raged at the mountains. The truth was before me: For all my striving, all my hopes, all my whispered promises to myself and my father, it would end like this. We would all die in these mountains. We would sink beneath the snow, and ancient silence would fall over us, and our loved ones would never know how hard we had struggled to return to them. In that moment, all my dreams, assumptions and expectations of life evaporated into the thin Andean air. My love for my father swelled in my heart and I realized that, despite the hopelessness of my situation, the memory of him filled me with joy. It staggered me. The mountains, for all their power, were not stronger than my attachment to my father. They could not crush my ability to love. I felt a moment of calmness and clarity, and in that clarity of mind I discovered a simple, astounding secret: Death has an opposite, but the opposite is not mere living. It is not courage or faith or human will. The opposite of death is love. How had I missed that? How does anyone miss that? Only love can turn mere life into a miracle and draw precious meaning from suffering and fear. For a brief, magical moment, all my fears lifted and I knew that I would not let death control me. I would walk through the godforsaken country that separated me from my home with love and hope in my heart. I would walk until I had walked all the life out of me, and when I fell, I would die that much closer to my father."

"Thoughts About the True Miracle in the Andes", Cynthia Boaz, t r u t h o u t, quoting Nando Parrado from "Miracle in the Andes", 2006

I let Parrado's words hang around a bit. The opposite of death is not life, it is love. I have struggled over the last year to understand how we came to the point where Sasha was living and dying, where the two were no longer opposites. We have struggled with our own dim awareness that Sasha was dying, telling CCU that we needed to know that. As if we didn't know it in our heart. There is another old saying: love is blind. Love first lead us to push aside this awareness Sasha was dying, then love lead us to bring Sasha home to die. And now, all we have left of those two tumulteous years is love. Love for Sasha, love for those who cared for Sasha and love for those who travel Sasha's path.

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.