A new Patient Safety Centre links Sickkids, Sunnybrook and U of T Faculty of Medicine

University of Toronto Faculty of Medicine has partnered with Sunnybrook Health Sciences Centre and the Hospital for Sick Children to create a new University of Toronto Patient Safety Centre that will "foster novel research and education projects aimed at improving patient safety both locally and internationally" and "provide a focus for collaboration across the Toronto Academic Health Science Network including all the affiliated hospitals and all of the health science and related programs at the University." (my emphasis).

This is exciting news because Patient Safety work positively aligns families and staff collaboration efforts. Patient safety is a top level shared focus. Patient Safety research also squarely focuses on the communication problems that account for as much as 60% of sentinel (death and serious injury) events and continuously improved communication is at the heart of family centred interprofessional practise. Patient Safety began as a parent movement advocating new proceedures to learn from and eliminate error and grew with academic research, education, hospital quality and risk management reports and changes to practise, from surgery checklists to hand wash campaigns to involving patients and parents at Rounds and with medications to new thinking on medical error disclosure.

Patient Safety may very well be the communication glue and 'bridge' linking the family-centred bubble around the patient and the interprofessional bubble around the team(s).

Joining Director Dr. Kaveh Shojania as co-lead is Dr. Anne Matlow, Medical Director of Patient Safety and the Director of the Infection Prevention and Control at SickKids Hospital in Toronto.

Go well Brave Warrior

Today Wyatt said goodbye to his mom and the Celsie family and entered the hearts of all those who met or heard of him. He touched so many in his incredibly brave life and was so lucky to have such a devoted mom beside him every day on his difficult journey. Lisa I hope you can take some comfort in knowing the world is a better place for Wyatt and that we are better for knowing your son. Hamba gahle Wyatt.

Physical therapy benefits ICU patients

A recent controlled trial of 104 patients on ventilators in an intensive care unit confirms that "Co-ordinating the efforts of doctors, physical and occupational therapists and nurses can achieve better outcomes in terms of the survival and mental and physical recovery of critically ill patients receiving mechanical ventilation."

"Among the 49 patients who were assigned to early exercise and mobilization — bathing, dressing, eating, grooming, transferring from bed to chair, and using the toilet — 59 per cent were able to walk unaided and carry out these tasks of daily living after discharge.

In comparison, 35 per cent of the 55 patients in the control group who received standard care were able to achieve the same "independent functional status" over four weeks of followup.

People who received the early physical therapy intervention also suffered half as many days of delirium in the ICU (2.0 days) as those in the control group (4.0 days).

Intervention patients also needed a ventilator for fewer days while in ICU (23.5 days versus 21.1 days for control), the researchers found.

"A strategy for whole-body rehabilitation — consisting of interruption of sedation and physical and occupational therapy in the earliest days of critical illness — was safe and well tolerated, and resulted in better functional outcomes at hospital discharge, a shorter duration of delirium, and more ventilator-free days compared with standard care," the study's authors concluded."

As a family-centred care support, the integrated Rehab team can also help interested parents learn how to safely touch their sedated or ventilated child. What about helping parents interested in doing more than read to their child and stroke their hair - is there a place for physical therapists to show interested parents basic forms of therapeutic touch or tiny tot massage? There is debate about the exact therapeutic benefits of touch. Would parents feel less stress or higher satisfaction ratings? Can parental touch in the ICU contribute to healing?

Here is the CBC article on research into physical therapy benefits for ICU patients.

Hospital Reviews Bereavement Practises

A hospital wide directive has been sent to all units asking for a full review of all bereavement practices. I learned about this request when I checked my voice mail Friday morning and heard an invitation to share feedback on Sasha and our family's experience with one of the units that cared for her. My hope is that units will speak to staff and parents, identify best practices and barriers, deepen inter-professional education and competency and offer families more consistent and transparent palliative and bereavement support with particular attention paid to the ICUs. I applaud this directive from the office of the Chief Nurse Executive and Interprofessional Practice Chief.

Palliative researcher Kim Widger seeks to interview families

A 2007 Canadian study estimates that between 5% and 12% of dying children and their families receive specialized palliative care and counselling from a dedicated palliative care program. There is also no consistent followup by the health care system with families after the child's death. To help remedy this reality, Kim Widger, one of the above study researchers, has begun research to develop a survey that can be sent to every family who experiences the death of a child so the health care system can improve palliative care and support. Kim's study has been supported by the Innovation Fund Into Palliative Care Research that the Sasha Bella Fund contributes to. If you know a family whose child has died, who might want to share their experience, whether they were supported by palliative care services or not, we would be very grateful if you can forward them the detailed research description and call for family participation which includes Kim's contact information. The focus group interviews will be held in Toronto and Hamilton over the coming weeks.

To participate or ask any questions about the study please contact Kim Widger at 416-
978-2859 or by email at kim.widgerATutoronto.ca

Measuring the Quality of Children's End-Of-Life Care: Summary Of Research Project by Kim Widger

A child’s death has a widespread and long-lasting impact on parents, siblings, extended family, the community and those who care for the child. Therefore it is important that the care be of the highest quality.

In this research we are developing and testing a survey which asks bereaved parents to report on various aspects of care provided to their child and family before, at the time of, and following the death of their child. Through a review of existing research with parents we have identified care needed in five areas by parents from health professionals in order to have high quality care. The areas are: connect with families, involve parents, alleviate suffering, share information, and provide bereavement care. The research has three phases. In Phase I will have focus groups with parents. I will ask parents what they believe is important to quality end-of-life care for children and their families. Phase 2 will involve creating the survey questions about quality care. The questions will be based on what parents said was important during the focus groups. When all the questions are created, we will ask health professionals and parents to review the questions to make sure they are clear and easy to understand. We will also ask if the questions seem to be about quality care and if anything is missing. Between 5 and 10 parents will take part in Phase 2 of the study. Phase 3 of the study will involve about 100 mothers. These mothers will answer all of the questions so we can learn about the quality of care that they received. We will also see how well the questions work to measure the quality of children’s end-of-life care. Part of the study will also look at the best way to ask parents about the care they received and to make sure that these type of questions do not cause a burden to parents.

The survey developed in this study will provide a way for health professionals, health systems, and policy makers to improve care provided to families facing the death of a child. My hope is that once the survey is developed and is shown to work well to measure the quality of care, it will be used in hospitals across Canada to give bereaved parents the chance to give feedback about all of the good and not so good things they experienced so health professionals are always listening to parents and working to give the highest quality care to families.

"One tiny soul, one big forest" is an amazing sharing

It is so rare to read an article on sick children and experience a sense of calm reflection so I was very moved by how Andee Pelan shares the story of her daughter Sadie Sioux who died at age 4 months waiting for a heart transplant. "Any decision you make is the right decision because it's based on the information you have at the time. You have the best intentions – don't bother with regrets, with `if onlys.' There is no sense in that" says Andee. At the same time, "Answers are a dime a dozen. It's questions that are important." Andee reminds us to cherish each moment with our youngsters, be present for the living and ask constructive questions. Thanks to Andee for sharing Sadie with us and to Diane Flacks for connecting readers with her and Geri's beautiful Mother's Day memorial. You can read the article here.

Exciting CCCU family centred initiatives

Here are some initiatives, pilots and family related news from The Cardiac Critical Care Unit, the ICU for the Labatt Family Heart Centre.

Renovation of Room 53 for long stay patients

Arguably the biggest structural change to the CCCU in years will be the complete renovation of the large room 53 facing out onto the Atrium as a long stay location. Improvements include all new decorations to make the room more attractive, more privacy for individual patients and families, new lighting that can be dimmed for each bedside and the turning of the storage room into a play and therapy room. This renovation has been in the planning for almost two years and apparently the work is now imminent.

'My Child's Day' program piloted

Alison Hassall, a Physiotherapy Academic and Clinicial Specialist, and her PT colleagues have been working diligently on 'My Childs Day', a binder that will give parents instructions, diagrams and care plans from all services helping the family. Alison has spent over a year developing the program, consulting with all services in the CCCU and stakeholders concerned that care data was stored outside the computer system, and then piloting the project. This Rehab championed family centred pilot sprang from a staff sense that patient care was becoming increasingly represented by data separated by discipline into separate spreadsheets and that this data was neither accessible nor particularly comprehensible to parents. Nor can the SIMs computer system import other file types like Word documents, pictures etc. Families also want both cutting edge medical support and continuing and expanded relationships with PTs, OTs, dieticians, respiratory therapists and other allied professionals. We are very excited about this family centred initiative and plan to hold a design contest to create an extremely functional 'binder' that could be used by other teams in the hospital. We will be able to share more over the coming months.

New APN in the CCCU assists families and staff

If there is one missing patient support that sums up the difference between a ward and an ICU it is the lack of Nurse Practitioners. These highly trained nurses really get to know your child and feed this textured patient and family information to medical staff. Nursing staff are very excited that Linda Fazari has been rotated from 4 into the ICU as a new Adanced Practise Nurse role in the CCCU to float where needed; staff joke that Linda is now "taking patients" as she regularly follows several patients and families. The experience, knowledge of 4, non-rotating presence and ability to assist both families and other staff was hailed by fellow nurses who shared this exciting initiative.

Parent coffee group extends from 4D to CCCU

I was very happy to hear the 4D parent coffee group, started by social worker Ruta Niedra and colleagues in 2006 will now be extended to the CCCU. Yeah!! Currently about 5-8 parents participate each Friday afternoon and a social worker organizing the groups described the parent ability to air concerns and share information as nipping problems in the bud. Parents are given a feedback sheet to fill out before they leave. It is fantastic news that CCCU parents can talk with other parents in a staff supported environment.

Other Initiatives:

* CCCU is exploring having a nurse who initially meets the family continue to checkin on the patient and family to offer communication and contact consistency. This Contact Nurse will be of particular help to long stay patients and patients facing great uncertainty and their families assimilating lots of new information and getting comfortable with a new team.

* the CCCU welcome binder is to be updated and staff are updating cardiac articles at AboutKidsHealth.

* the Labatt Family Heart Centre "Family Day" will be held in September

* a Transition Day event to support patients approaching adult care will be held in May