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.

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.

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.

SickKids free family wireless goes live Mon June 20

On Friday, an Information Management and Technology director confirmed the imminent public launch of SickKidsWifi.

I am pleased to announce that free wireless access to the Internet for patients, families and visitors using their own mobile devices will be launched on Monday June 20th – a service that has been much sought after by those who come to SickKids.

You will now be able to connect to SickKidsWiFi via any wifi enabled device such as laptop, smartphone, iPad, iPod, PlayBook etc. The entire hospital is not covered however there will be coverage most importantly in patient rooms, the Atrium and the Gerard street food court, along with the Main Floor of Black, Burton and Hill wings and the first floor Library and North Conference Room.

There will be announcements this week in Daily News, This Week and Dear Parent Letters will be distributed to the units with a one page handout for our families.

Looking forward to deactivating my roaming mobile connection and turning on SickKids wifi next visit!

2011 Sasha Bella awards for Family Centred Care Excellence

The 2011 recipients of the Sasha Bella Fund awards for Excellence in Family Centered Care in the Labatt Family Heart Centre are occupational therapist Lisa Hoffman and nurse practitioner Judith Wilson. Judith and Lisa are the most experienced staff to be nominated and as long serving heart center staff were anchors in Sasha's care from 2004-2006.

Lisa's home visits during Sasha's first year and a half helped her with every step of skills development from rollover to sit, crawl, walking hand over hand, first unaided steps and, a biggie, eating. Sasha's success with these basics were our good times and a huge confidence boost that Sasha could develop and we could help her and all live and love together for an unknown amount of time.

Judith was nurse practitioner during Sasha's catheterization visits and her final five month stay and the combination of her gentle way and calm communication and extreme nursing competence were integral to us staying positive and focused and learning to feel we could care for Sasha even though she had an extreme heart and liver condition.

The hard work of health care professionals like Judith and Lisa make family centered care appear effortless. Not surprisingly, both visited our home after Sasha died, among about a dozen 4D staff who did so. Sasha touched hundreds of staff at SickKids but these were stars among her closest circle of care and I was so happy to see them recognized.

Judith's nomination letter described her as "assertive, expedient and accurate during clinical crises and her 'straight shooter' style and positive, forward thinking are to be admired" and that she engages in "truly loving and kind acts" such as the support of a seven year old Japanese heart patient and her family. With the child immobile and in precarious health and the family dependent on an interpreter, the highlight of her day was a visit to Tim Hortons with Judith for an iced expresso. Judith took her with multiple IVs on a wheelchair to see Santa at the Eaton Centre and then a stop at Nathan Phillips Square to watch skaters. A several hour winter transport with a child in precarious health is typically not done for fun and this was a unique family experience that took great nursing skill.

As a lovely first, Lisa Hoffman's nomination was from a nursing colleague for care of her child and family and Carrie's words as a mom and nurse educator resonate strongly as we celebrate family centered care.

"When our family reflects on what Lisa did for us, we see that she really listened, she trusted us, she helped ease the burden of uncertainty and she developed a plan of care that was doable and that worked for my daughter and our family. Lisa was the first and only health care professional who presented the big picture to us in a meaningful way."

Carrie credits "meltable-solids" as allowing her daughter to eat finger foods today and "tearless tolerable exercises which mimicked playtime" as life changers for her child and family.

Lisa and Judith, thanks for what you do so well each day for sick kids.

Also a big thanks to the many staff who have made time over five years for work to circulate, nominate, select, contact recipients and confirm nursing award day arrangements.

Judith received a rose from Nursing and a framed award from the Sasha Bella Fund after Nursing Excellence Awards on May 7 and Lisa's award will be at a future event of her and Rehab's choosing.

Exciting Patient Safety Symposium - June 9, 2011

SickKids 7th Annual Patient Safety Symposium on June 9, 2011 offers an exciting lineup. Here is a taste of the day from the titles of the presentations: adverse events in hospitalized children in Canada, UK Paediatric Trigger Tool, teamwork and communication, system wide learning from critical events and improving parent provider communication. Breakout sessions are on trigger tools, simulation, targeting zero and family council (FCCAC) parent David Mosher with Drs Niraj Mistry and Stephen Porter on 'Optimizing Patient Safety Through IT Solutions'.

The number and quality of SickKids patient safety presenters speaks to the energy and committment of staff across the hospital to tackle safety and include parents in this critical initiative. Here is the symposium's online agenda.

A testimony from the CCCU

During a break in the liver family day I bumped into the clinical director of the Critical Care Unit in the Atrium. He was one of two of Sasha's most senior helpers in CCCU and we had our most challenging conversation about Sasha and care with him about a week into her ICU stay. He sent me this note which I have lightly edited as to the positive impact of the ICU's family communication program which the Sasha Bella Fund For Family-Centered Care supported in 2010 and also to the continued relevance of family supports.

I recently dealt with a very challenging case with team/communication issues, some errors and a complex ICU stay.  The child died and I have been helping the mother get through the post death trauma. I stressed the things that are in place to deal with mitigating error, reporting and review of error and how we create an environment of no blame and encourage individuals to self report in a constructive way. I told her of our experience with getting members of our staff trained in Crucial Confrontations and, further, being trained as trainers. I  am one of 2 physicians here who have done this. After I told her that another family had been instrumental in this happening, she asked me to recognize that family. So here it is.