Scotland pioneers national patient safety program

"NHS Scotland is the first health service in the world to adopt a national approach to improving patient safety" via the Scottish Patient Safety Alliance with the Institute for Healthcare Improvement serving as technical lead. In particular have a look at Resources and the extensive Toolkit.

Redefining Patient Centred Care: What Does It Really Mean? June 17, 2010

In an age when Ontarians can access extensive health information at a keystroke, patients and their families are  increasingly advocating for themselves. Accordingly, pressure is growing upon hospitals, physicians and other clinicians to be increasingly transparent and collaborative.

Some physicians are reluctant to give patients greater control, and at the same time, some patients are accustomed to being deferential to their health care provider, and many are not aware of their legal rights in this connection. Against this backdrop is evidence that patient centred care can improve patient outcomes and reduce costs.

Conference Objectives

By the end of the conference, participates will be able to:
• Recognize what patient centred care really means
• Identify human and institutional barriers to patient centred care in Ontario
• Acquire up to date information on current policies and law regarding patient centred care in Ontario
• Consider how to start implementing patient centred care in their organization
• Physicians: recognize whether implementation of patient centred care is going to impact your practice

An application has been submitted and is currently under review by the Canadian Association of Physical Medicine and Rehabilitation to have this event approved as an Accredited Group Learning Activity (Section 1) as defined by the Maintenance of Certification Program of the Royal College of Physicians and Surgeons of Canada.

Members of The College of Family Physicians of Canada may claim Mainpro-M2 credits for this unaccredited
educational program.

Funding may be available for Ontario RNs from the Nurse Education Initiative, which is funded by the Ontario Ministry of Health and Long-Term Care. For additional details, call 1-866-464-4405 or


8:30am Registration and Continental Breakfast

9:00am Welcoming Remarks and Conference Overview

Chair: Wayne Mills
Challenging Leaders Limited
Person Centered Health International Action Group - 1 million acts of Person Centered Health

9:05am Patient Stories

• Stories about journeys through the health care system

Learning objective: evaluate a patient’s perspective on the benefits of disclosing health care information to patients on an unprecedented level

e-Patient Dave deBronkart
The Voice of Patient Engagement

9:40am The History of “Patient Centred Care” Notion

• How and when it all started
• Definition
• The current landscape
• The benefits of cultural change to “person-centred care”

Learning objective: analyze the current multiple definitions of patient centred care

Dr. Vaughan Glover
CEO & Founder
Canadian Association for People-Centred Health (CAPCH)

10:25am Networking Refreshment Break

10:45am Barriers to Achieving Person Centred Health care

Disclosure of Information

• Not everyone agrees with disclosure of patient records
• Not everyone agrees on how much should be disclosed
• Not everyone agrees on patients being key voices in decision-making about their care
• Join the debate for and against disclosure

Learning objective: analyze all points of view on whether disclosure of patient records would benefit the delivery of health care

Moderator TBA


• Do policies need to change or is everything needed in place right now?
• Is it possible to affect the journey through more effective government policies for the individual health rights?
• Who owns the patient record by law?
• Where does this fit into the Canadian Bill of Rights?
• The new proposed bill, “Excellent Care for All Act, 2010” - what would be the impact on Patient Centred Care?

Learning objective: comprehend the policies in place today

Adalsteinn Brown
Assistant Deputy Minister - Health System Strategy Division
Ministry of Health and Long Term Care

11:35am Engaging Physicians in Patient-Centered Health

Learning objectives: list 3 paradigm shifts in medical practice that set the stage for patient-centered health; explain how physicians benefit from this shift in practice
Daniel Z. Sands, MD, MPH
Cisco Internet Business Solutions Group
Harvard Medical School
Society for Participatory Medicine (Boston)

12:15pm Networking Luncheon

1:00pm Success Stories of Implementation of Person Centred Model in Another Province

Learning objective: evaluate the work that has been done at Capital Health around person centred care

Chris Power
President & CEO
Capital Health

1:40pm Success Stories of Implementation of Person Centred Model in Ontario

Living Patient-Centred Care Values with Patients in the Lung Transplant Program: What it Really Means

Learning objective: measure the work that has been done at UHN around person centred care

Nikki Marks
Nurse Practitioner
UHN Multi-Organ Transplant Program

Jane Hollett
Patient-Centred Care Project Manager

Sue Stuart

2:10pm Networking Refreshment Break

2:20pm Person Centred Model - How/Where to Start Implementation in Your Organization?

Learning objective: review the process of implementation of a person centered model

Dr. Judith Belle Brown
Chair Master of Clinical Science and PhD Programs in Family
Centre for Studies in Family Medicine
Department of Family Medicine
Schulich School of Medicine & Dentistry
The University of Western Ontario
Primary Health Care System (PHCS) Program, System Integration & Innovation Research Network (SIIReN)

3:00pm Patient Centred Care: The Patient Perspective

Learning objective: distinguish the patient’s perspective on patient centred care

Dr. Sholom Glouberman
Associate Scientist , Kunin-Lunenfeld Applied Research Unit
Philosopher in Residence
Baycrest Centre for Geriatric Care
Adjunct Assistant Professor, Department of Health Policy
Management & Evaluation, Faculty of Medicine
University of Toronto
Adjunct Professor, Desautels Faculty of Management
McGill University
Patients’ Association of Canada

3:35pm The Need for Change!
Learning objective: assess the benefits of cultural change to patient centred care

Elinor Caplan
Former Ontario Minister of Health

4:00pm Wrap Up & Adjournment for the Day

e-Patient Dave deBronkart is in Toronto June 17 for OHA PCC symposium

Dave's keynote is appropriately The Voice of Patient Engagement as he has come to symbolize patient partnership and advocasy. On Twitter over 3000 people follow his posts and the latest post on his blog asks for opportunities to speak and offers some great testimonials.

“Your content was great, your slides most impressive, and your delivery spectacular. I have no doubt – there are many in the room who are in a different place now because of you.” Jim Conway, MD

“e-Patient Dave gave the best keynote I have heard in years at the ICSI conference in the Twin Cities. If you want to learn and cry, book him.” Kent Bottles, MD

My Sister's Keeper

When we saw the trailer for My Sister's Keeper, Pamela and I looked at each other with wide eyes, not saying thumbs up or down so much as OMG. Over the last few days I have watched it several times and found it extremely moving and can only imagine how a parent or sibling might feel. Here are some of the quotes that made me want to reach for a pencil. The movie is transcribed here without all the names but those who have seen the movie will likely place these moments.

up in space you got all these souls flying around...looking for bodies to live in.

I'd like to suggest something completely off the record.

It was our fault. We went against nature and this was our comeuppance.

Do you hold her down, or do I?
Don't be dramatic.
You gonna take her ankles, I'll take her wrists? She's not a baby. You just can't trick her.

I know I'm going to die now.

I'm sorry I took all the attention when you were the one who needed it the most. Dad, I know I took your first love from you. I only hope that one day, you get her back.

I'm real sorry.
Don't be. There's no shame in dying.

Hi, how are you?
Good, how are you?
I'm good, thank you.
Have you spoken to the Make-A-Wish people?
What is this? What is this, the "quality of life" speech?
Mrs. Fitzgerald, you might want to consider taking Kate home.
Making her comfortable......managing her pain.
No hospices. What? You think we should take Kate home to die?
What do you want me to say, Sara? It's an option. Look, I know you don't listen to anybody, but it's our job to tell you. Death is a normal process of life. You need to acknowledge that.
No, I don't. Who is this broad?

He has scars on his hands...from graft-versus-host. I could feel them when we were holding hands.
Was that weird?
It was kind of like we matched.

I'm behind you, no matter what. I'll do whatever, and I do. I'm just not sure
you're seeing the big picture.
What big picture, Kel? Spit it out.
I know it's important for you to feel like you never gave up. I mean, who are you if you're not this crazy bitch mother fighting for her kid's life, right? But there's, like, a whole world out there. You don't see any of it, nothing. Sooner or later, you... You gotta stop. You gotta let go.
I can't.

Um, how do I do this? I mean, just get her up and walk her out of here, or?
Discharge her for the day. The insurance company will definitely not approve this... we'll have to re-admit through emergency. But if she happened to be there at,
let's say, 7:00... I just might be there to meet her.
It's one day. Kate's been through the wringer, so if it's not gonna make her any worse...I say take the kid to the beach.

Kate's dying and everybody knows it. You just love her so much that you don't want to let her go. But it's time, Mom. Kate's ready.
That's not true. Kate would have told me.
Mom, she did tell you. She told you a million times. You didn't wanna hear it.

Mom's gonna chop me and cut me...till I'm a vegetable.

My sister died that night. I wish I could say that she made some miracle recovery...
...but she didn't. She just stopped breathing. And I wish I could tell you that there was some good that came out of it... that through Kate's death we could all go on living. Or even that her life had some special meaning... like they named a park after her, or a street... ...or that the Supreme Court changed a law because of her. But none of that happened. She's just gone... a little piece of blue sky now. And we all have to move on.

I'll never understand why Kate had to die and we all got to live. There's no reason for it, I guess. Death's just death, nobody understands it. Once upon a time...I thought I was put on Earth to save my sister. And in the end, I couldn't do it. I realize now...that wasn't the point. The point was, I had a sister. She was fantastic. One day, I'm sure I'll see her again. But until then... our relationship continues.

Patients and Primary Health Care Providers Working Together to Enhance Patient-Centred Primary Health Care : Moira Stewart

Patients and Primary Health Care Providers Working Together to Enhance Patient-Centred Primary Health Care

Moira Stewart, PhD
Director and Professor
Centre for Studies in Family Medicine
University of Western Ontario

Wednesday, 2 June 2010, 3:10 – 4:30 pm
Room 100a, Jackman Humanities Building
170 St. George Street
(across the street from the St. George subway station)

Patient-centred Primary Health Care has been defined as a method of patients and primary health care providers working together.

The overarching principles are: sharing power in the relationship; and making connection at the emotional level. There are six interacting components of patient-centred care: exploring both the disease and the illness experience; understanding the whole person; finding common ground; incorporating prevention and health promotion; enhancing the patient-doctor relationship; and being realistic.

When patients and primary health care providers experience patient-centred care there are a number of benefits to the patient (satisfaction and health outcomes); the provider; and the system (more efficient use of health system resources). Case examples will illustrate the concepts presented.

Admission Free - No Registration Required

Safe Patient Centred Care - Save Your Money!

We heard a sobering statistic from Mary Jo last month: SickKids costs will rise by 6 percent next year - the hospital budget will rise 1.5%.

How do we square this circle? Discovery patents? Sure. Consulting services for hospitals and programs in Doha and Ghana? Why not. But what about a paediatric hospital's reason for being - how do we save money by doing even better at helping more kids?

Let's borrow a familiar foreign bank's refrain and invest in ... a culture of transparent patient safety and family partnership that saves millions with fewer days in hospital, fewer proceedures and less litigation.
"You work hard. You havent taken chances. You've done everything right. And still you feel the pinch. Not sure what to do? Stick to the fundamentals. Grow your ... FAMILY-CENTERED CARE."

"Saving money is like the weather. Everyone talks about it. But you should save for a rainy day. But how? Invest it. Put it into ... PATIENT SAFETY PROGRAMS."

Saving lives is no laughing matter. Reductions in infections, wrong site surgery and a host of other factors have saved lives and reduced time in hospital. There is increasingly evidence that confronting mistakes reduces litigation and future mishaps. How can we get even more creative and do more?

Teach patient safety

The Canadian Patient Safety Institute offers a Patient Safety Officer Course and are calling to institutions and individuals interested in joining the Master Facilitation Network of the Patient Safety Education Project in Canada.
The Canadian Patient Safety Institute, in partnership with PSEP from Northwestern University, is currently announcing a call for applicants to join our pan-Canadian, interdisciplinary team of Master Facilitators. Our Master Facilitator Network will be comprised of professionals who are passionate about patient safety, and have the proven skills and ability to inspire change. As a Master Facilitator for PSEP-Canada you would join a dynamic team in bringing this frontline patient safety program to your healthcare colleagues across the country. This announcement and invitation is to interested individuals working in healthcare, including health care providers, administrators, and educators. DEADLINE EXTENDED TO JUNE 30TH 2010!

Download the 111Kb Patient Safety Master Facilitator application PDF. I would love to see a parent at SickKids have this opportunity.

Cuff during heart attack reduces heart attack size

Ischemic preconditioning is a powerful innate mechanism the body uses to protect all its tissues – not only the heart – from the effects of lack of blood flow. Dr Reddington and Dr Kharbanda developed a method to harness this natural mechanism in 2001 when they found that reducing the blood flow in the arm sends a warning message to the body and the heart and releases substances in the blood that protect the body and the heart from subsequent injury. The SickKids-developed preconditioning method consists of using a regular blood pressure cuff to transiently cut off blood flow to the arm; the cuff was inflated for five minutes, then deflated for five minutes, four times. At the hospital, the patients received routine heart attack treatment including angioplasty (a procedure to mechanically open narrowed or blocked blood vessels to the heart). Compared to the control group, the size of the heart attack was reduced by about 30 per cent overall in patients who were preconditioned. In patients having the largest heart attacks, the size was reduced by about 50 per cent.

Anesthesia tackles patient safety: do you know where your adverse event protocol is posted?

An Anesthesia Patient Safety Foundation website I stumbled upon shows health professional use of the web to help staff and families with resources including a step by step adverse event protocol. Their 2006 Special Issue: Dealing with Adverse Events confirms poor communication can traumatize a family.
Most adverse events are not caused exclusively by a single individual or due solely to the patient's particular disease processes. The situation that arises is more likely to be one in which there has been an adverse event or a poor outcome that involves multiple caregivers and may or may not involve negligence. Patients and families (as well as the caregivers involved) may experience stress not just around the event or outcome itself, but see it increased by subsequent communications and interactions that are not handled well or do not meet their needs at the point in time.

In the Organized Response to Major Anesthesia Accident Will Help Limit Damage: Update of Adverse Event Protocol Provides Valuable Plan the detailed protocal runs through verification, consultation, communication and shutting down of the OR (by not turning off, cleaning or fixing anything).

Three personal stories shared with the APSF Board of Directors highlight the importance of getting patient safety responses correct as “Incredible Save”, “A Parent’s Nightmare” and “A Question of Competence” offer differing cautionary tales. The many general and specific lessons drawn by event participants is undiminished over 5 years, can be generalized to other disciplines and would be a worthy challenge for any hospital in 2010.
One important item that could immediately and directly help prevent or mitigate patient injuries was again broadcasting a reminder that “Administrative Guidelines for Response to an Adverse Anesthesia Event” have been published and are available on the APSF website:, “Resource Center,” “Clinical Safety Tools,” then “Adverse Events Protocol.” Another suggestion was the simple idea of surveying patients/families to help determine what type and how much information and communication they really want, both in general and specifically concerning an adverse medical event....A primary specific initiative is to continue to collect (possibly including through a “hotline” to the APSF) and publicize these potent “stories” of patients/families who have experienced an adverse anesthesia event. ... A related initiative will be the use of the great power of the telling of these stories to develop a curriculum in “the patient side of anesthesia patient safety” for distribution to all anesthesiology residency and nurse anesthesia training programs, as well as to medical schools for incorporation into their clinical teaching. Closely tied would be additions to modules used in anesthesia simulator training that add experience in post-event management of both the patient/family and the involved anesthesia provider. This intense role-playing likely would evoke strong emotions and would be videotaped for the debriefing of the participants in the specific simulation and also for potential inclusion in curriculum modules for anesthesia trainees and medical students. Having these modules available on the web for all anesthesia providers through their respective national professional organizations also would have a significant impact because their direct relevance and inherent drama would provoke widespread interest and attention.

One major recurrent theme was the failure of communication with the patient/family at the time of the catastrophic event and thereafter. The overall concept of trying to shift from a “culture of blame” to a “culture of learning” certainly applies. It was agreed that, in the spirit of “the patient’s bill of rights,” there should be an expectation by the patient/family of open communication and full disclosure (even to the point that the surgical/anesthesia consent forms should specify that after any event, prompt full disclosure will be made). The expected concerns about risk management and the potential legal liability implications of apologies and full disclosure were expressed, but reference was then made to the study from the VA system demonstrating a significant reduction in liability costs associated with prompt full disclosure after an event. Related was the favorably-received suggestion that patient care facilities where anesthetics are administered should have an ombudsman or “patient advocate” always immediately available or on call so that this advocate can immediately interpret, facilitate communications, and organize support of all types for the involved patient/family in the event of an anesthesia accident, or any acute medical adverse event for that matter. This tied in to the projected goal that perioperative services should be “high-empathy organizations” as well as high-reliability organizations. The proposal that patient/family representatives be included on the committee for the peer-review analysis after an adverse event provoked significant discussion, but did not yield a consensus. However, the suggestion that the institution and the practice group involved with an anesthesia accident share with the affected patient/family the details of changes made following the event (whether policy, procedure, behavior, equipment, or organizational) intended to prevent any recurrence of that type of accident met with widespread approval.

Promoting thoughtful, compassionate, and open support for anesthesia providers who have been involved in a catastrophic anesthesia accident (even one with an eventual good outcome) is another unanimously accepted proposal resulting from the APSF Board workshop. Clearly the front line and the bulk of this effort should be at the local level, within the institution and immediate group of the involved anesthesia provider(s). Prospective concrete plans that are widely disseminated to all involved should be in place in order to avoid a confusing scramble of disparate resources at the time of an event. Group leaders and facility administrators should immediately activate the pre-planned response to provide support and counseling, as well as specific advice and encouragement about disclosure to the involved anesthesia personnel. Further, it was suggested that the APSF could establish another type of “hotline” to offer situation-specific suggestions to assist and support the personal needs and concerns of anesthesia providers finding themselves under stress following involvement in an adverse event. The more general question of anesthesia providers under so much personal stress as to be dangerously distracted and a safety risk was also broached. Enhanced vigilance and sympathetic support from coworkers, promoted by articles such as this one, was seen as the best immediate strategy.

6th Annual Patient Safety Symposium is on Thursday June 10, 2010 8:00 AM - 4:00 PM: "Partnering in Patient Safety for a Better SickKids"

SickKids Patient Safety Symposium shines a spotlight on the work to keep patients safe from harm, to learn from adverse safety events and to create a culture of safety that includes the family and leads to effective changes by the bedsides and in the operating rooms.
In preparation for Accreditation Canada 2010, this year’s symposium will focus on enhancing awareness of the required organizational practices (ROPs) that organizations must have in place to enhance patient safety and to minimize risk. By highlighting presentations and activities underway throughout our organization, staff will have an increased awareness of ROPs focusing on the following patient safety areas: patient safety culture, communication, medication use, worklife, infection prevention, fall prevention and other risks. (Event details).

The Accreditation 2010 online resources include a full list of these required organizational practises in the ROP Handbook (PDF, 719Kb).

The Symposium includes three parent speakers, a rep on the Families as Partners in Patient Safety Committee and two reps on the Family Centred Care Advisory Council.

7:30 AM - 8:15 AM Registration
8:15 AM - 8:30 AM Welcome/Introductory Remarks
8:30 AM - 9:15 AM Leadership’s Role in Patient Safety
Joseph D’Cruz
Professor of Strategic Management, Rotman School of Management
8:30 AM - 9:15 AM Role of Leadership at SK’s
Dr. Lawrence Roy
Interim Vice-President, Medical and Academic Affairs
9:15 AM - 10:00 AM Safe Surgery Checklist
Dr. Chris Hayes
Medical Officer, CPSI; Medical Dir. Quality & Patient Safety, St. Michael’s
9:15 AM - 10:00 AM SickKids Safe Surgery Checklist
Dr. James Robertson
Staff Anaesthetist, SickKids
10:00 AM - 10:30 AM Coffee Break/Posters
10:30 AM - 11:15 AM "Disclosure Policy"
Janice Campbell
Risk Manager, SickKids
10:30 AM - 11:15 AM Presentation on 'Just Culture' and 'Accountability'
Aileen Killen
Director, Patient Safety Program,
Memorial Sloan-Ketting Cancer Centre, New York, NY
11:15 AM - 12:00 PM Adverse Events related to narcotics
Dr. Conor McDonnell
Associate Staff; Anaesthesia, SickKids
11:15 AM - 12:00 PM Medication Management- Accreditation
Emily Musings
Executive Director of Pharmacy, University Health Network
12:00 PM - 1:00 PM Lunch
1:00 PM - 1:45 PM Family Related Topics

1) FCCAC (Family-Centred Care Advisory Committee)
Denise Clayton (Family Rep.)
Jonathan Blumberg (Family Rep.)
2) FPPS (Families as Partners in Patient Safety Committee)
Jane Ford (Family Rep.)
1:45 PM - 2:15 PM Infection P & C topic (TBD)
Rick Wray
Director, Infection Prevention & Control, SickKids
1:45 PM - 2:15 PM Virox Study: Knowledge, Attitudes & Behaviours of PSA’s
Dr. Anne Matlow
Medical Director, Patient Safety and Infection Prevention and Control
2:15 PM - 2:45 PM Poster Awards/Presentations
2:45 PM - 3:00 PM Coffee Break
3:00 PM - 3:30 PM Safe Environment Initiative:
- Safe Sleep
- Falls/Entanglement Prevention
Pam Hubley
Associate Chief of Nursing, Practice; SickKids
Rita Damignani
QA/Patient Safety Coordinator, SickKids
3:30 PM - 4:00 PM Team Capacity Building: Report on SCOPE project
Michael Rothstein
Infection Control Practitioner, SickKids
4:00 PM - 4:15 PM Closing Remarks

NICU practise change to dedicated stethoscopes

Poster in a neonatal intensive care unit classroom, March 2010, describes the practise change to dedicated stethascopes after discovering the prevalence and persistence of microorganisms on the stethoscope bells. Each infant will now have its own stethoscope by the bedside.

Breastfeeding Conference 2010 in Toronto

The 20th Annual National Breastfeeding Conference takes place Thursday October 21 & Friday October 22 with support from INFACT Canada, Toronto Public Health and Sunnybrook Health Sciences Centre. The conference goals are to:
* Realize the underlying principle of the WHO Global Strategy on Infant and Young Child feeding that “mothers and babies form an inseparable biological and social unit.”
* Develop awareness of societal and institutional practices that impact on maternal breastfeeding behaviours.
* Explore current research that supports the development of evidence-based practice.
* Mobilize the passion and enthusiasm of participants toward responsible action, within an ethical framework.
* Provide opportunities for participants and speakers to network and share.

"Your right to breastfeed anywhere, anytime is protected by the Canadian Charter of Rights and Freedoms." - INFACT Canada (Infant Feeding Action Coalition)

Milk banks good for patient safety

On April 26 2010, a member of Toronto Needs A Milk Bank! writes:
Ontario Milk Bank is working on this...I believe they have narrowed it down from 3 to 2 hospitals....
The writer belongs to Cambridge Community Breast Feeding Group. Look forward to updates or news. In 2007, a NICU mom linked milk banks to improved patient safety.
My daughter just spent three months in the NICU at Mt Sinai and Sick Kids. In both hospitals errors occurred with milk handling. Milk needs to be screened as blood products are. A central milk bank would help to make this happen.

Inside Canada's only breast milk bank (Jan/Feb 2010) relays that "Women from coast to coast are donating to, or using, the breast milk bank at BC Women’s Hospital in Vancouver."

"Until the late 1970s, there were more than 20 milk banks across Canada. But in the 1980s, they struggled to stay open amid fears about the risk of transmission of AIDS/HIV through breast milk.

The BC Women’s Milk Bank is the only one to have survived, and it continues to use a strict screening process. In 2008, more than 100 women donated about 1,000 litres of milk, which were processed and given to about 1,100 children across the country. (Even after pasteurization and freezing, the milk is known to retain most of its healthy properties.)"

The INFACT Canada link at Cambrige Community offers a detailed overview of milk banks with some international information as well as this historical nugget:

"While most Canadians are familiar with the story of the Dionne Quintuplets, few people know that they owe their early survival to donated breastmilk. When the five little girls were born on May 28th, 1934, no one expected them to survive. Herman Bundeson, a renowned Chicago physician and expert on premature infants, telephoned Dr. Dafoe, the Ontario doctor who had delivered the quints, and offered to provide an incubator and donated breastmilk - two things he believed critical to the babies' survival. Within 52 hours of the quint's birth, the first shipment of donated milk arrived. In Toronto, members of the Junior League responded by collecting and delivering donated breastmilk daily to the Hospital for Sick Children. There the donated milk was pooled, boiled, bottled, refrigerated until evening, packed in ice, and shipped by overnight train to northern Ontario. Milk was eventually freighted from Montreal as well. In all, 120 shipments of human milk were sent, the first arriving on May 31st, when the infants were only four days old. When the quints were switched to cow's milk in October, they had consumed more than 8,000 ounces. These shipments, unique in history, were credited with keeping them alive.

Ironically, it was the infant feeding industry that took credit for the early survival of the quints. According to Pierre Berton, author of The Dionne Years, "Perhaps the most famous was the Carnation milk advertisements, which implied that the babies 'practically bathed in the milk,' and boasted that in the first 18 months of life, the quintuplets had consumed 2500 cans of the milk. In fact, the quintuplets 'hated Carnation milk, and refused point blank to drink it."

Cardiac Critical Care Family Initiatives fund's first focus, Communication in CCCU and PICU

Labatt Family Heart Centre has setup a new fund for Cardiac Critical Care Family Initiatives which has already received $45,000 in donations. The first strategic initiative is communication, which we are so happy to hear on this blog. Since orientation of senior staff in April, the unit is preparing rollout of 'Crucial Confrontations' training to a first group of interprofessional staff in both the CCCU and the PICU. According to the company website, this training "teaches a straightforward step-by-step process for identifying and resolving performance gaps, strengthening accountability, eliminating inconsistency and reducing resentment." The skill tools they list to achieve this accountability and evolve execution are:
  • Hold anyone accountable—no matter the person's power, position, or temperament.
  • Master performance discussions—get positive results and maintain good relations along the way. Stay focused on the real issues and avoid getting distracted.
  • Motivate without using power—clearly and concisely explain specific, natural consequences and permanently resolve problems.
  • Enable without taking over—creatively help others avoid excuses, stay on track, and resolve performance barriers. Learn to avoid roadblocks to performance.
  • Move to action—agree on a plan, follow up and engage in good reporting practices, and manage new expectations.
These would appear to be necessary interpersonal skills to achieve 'smooth' team dynamics. Perhaps we just expect nurses, doctors and all professionals to have just mastered them by the time they are on the floor yet so far the time devoted to team and family communication training in medical training is too little or too late. Such skills are learned (or not) on the job, hence my excitement to see how this particular training pans out for staff and families. It would also be great to see this staff training on teamwork find ways to appropriately include parents; the parent's point of view from first hand experience differs from that of staff in interesting and useful ways.  

Teaching and learning at The New Children's Hospital in Hamad, Qatar

I love this picture. The contrast between cultures, the body language, the smiles and steely determination, the gender imbalance and the incredible promise in the February news that SickKids Hospital will be advising over 5 years the development and operation of  the New Children's Hospital in Qatar. This paediatric hospital will have 217-bed and 45,000 square foot and is located in Hamad Medical City, the not-for-profit health-care complex in Doha, Qatar.
“While in Doha, SickKids staff will provide expert counsel in such areas as paediatric medicine, surgical services, interprofessional practice and education, family-centred care and research. The partnership will also see staff from HMC travel to Toronto to take advantage of fellowship and learning opportunities at SickKids.

A key component of our international strategy is to share our knowledge and to help other organizations build capacity within their own countries,” added Cathy Seguin, Vice President of International Affairs at SickKids.

As of result of its world-class reputation for excellence in paediatric medicine, SickKids won the contract to partner with HMC over other leading health-care organizations in the United States, Europe and Australia.

Through this partnership, we will be working very closely with SickKids to develop our New Children’s Hospital. It will open in 2012 in Hamad Medical City and is designed according to international best practice standards in paediatric care.  This is a very important project and partnership for us, and will have a tremendous impact on health care in Qatar,” said Dr. Al Kuwari, Managing Director at Hamad Medical Corporation. “The New Children’s Hospital will be the first full hospital in Qatar specializing in paediatric care, and we are proud to be working with a leading international centre of excellence in this endeavour.” 
Such a relationship provides an excellent opportunity for cross-cultural dialogue and research and the inclusion of family-centred care among the areas covered is very interesting. Certainly SickKids staff will teach and advise yet just as surely there is always much for us to learn to the benefit of families in Toronto from a large paediatric facilities in the Middle East. How will they approach forums for kids and family advisery, parental presence during intubation, palliative and end of life care, respect for different beliefs, the decision making of the child? I look forward to hearing about learning opportunities in Hamad especially with their equivalent of SickKids Kids and Family councils and family-centred care education and practise.

Palliative care should be a phased conversation about a supportive and holistic treatment with benefits

Maria Rugg welcomed a small group of health care staff and parents to the Toronto Central Palliative Care Network events to celebrate National Hospice and Palliative Care Week. The expert panel was asked to reflect when in the trajectory of a disease should 1) the child and 2) the parents and family be made aware that the child may die and palliative care be introduced. While palliative care guidelines suggest palliative care be introduced when the family is ready or depending on the type of disease, Maria highlighted a 2000 JAMA study, Understanding of Prognosis Among Parents of Children Who Died of Cancer: Impact on Treatment Goals and Integration of Palliative Care, which found on average that doctors knew twice as many days prior to parents as to the likelihood of death. The study concludes: "Considerable delay exists in parental recognition that children have no realistic chance for cure, but earlier recognition of this prognosis by both physicians and parents is associated with a stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care."

Maria then introduced the SickKids panel of experts. The notes below were hand written and attempt to capture some of the highlights. Some comments relate to two case studies, a 3 year old boy with cancer and what a young child can understand about a life threatening disease and an 11 year old girl with CF facing the choice of a lung transplant whose parents do not want her to have a choice to decline the treatment. The notes below mostly relate to the more general question of when and how to talk about palliative care.

Christine Harrison, Director of SickKids Bioethics Department, emphasized that when we are talking about truth telling we need to emphasize the importance and fragility of the trust between family and health professional and also the complexity of communication, including kind ways of delivering the diagnosis. The point is to allow for thoughtful decisions and for patients and parents to have control over the procedures. Some words are conversation stoppers, like cancer, death and palliative care. Think of a disclosure of a diagnosis as a staged process, not one event. Palliative care is a potential benefit, though not necessarily at the beginning. We understand that the family understanding of palliative care if often the same as end of life care and we can work to move this understanding. Be careful in that the decision is rightly theirs. Patients who feel they have had information withheld from them may have difficulty trusting.   

Oncologist Dr Eric Bouffet: I think the earlier you share the information the better. It can be overwhelming all coming at one time. When you say there is a 5% rate of success the parents often only remember the 5%. With neuroblastoma I explain there may be a 10-15% rate of success however you will hijack most of the child's remaining life with the treatment. In some cases it is important to clarify the options very early and there are times when I have to bypass a parent's desire to hide the reality [from their child]. He said he would not tell the 3 year old child that he might die but would be very pushy to have the 11 year old girl, already included in prior treatment decisions, have a say in the acceptance of a transplant option.

Pediatric palliative care physician Dr Christine Harrison: If this was truly a challenge panel then I would say one must always tell parents when this is an illness that they are likely to die from. It is our obligation that children and parents know as much as they can understand. When you say 'they may die' then the conversation should happen early but not necessarily at the first visit. At a first visit, there is only so much families take in. One of the reasons palliative care is difficult to hear is because health care professionals find it difficult to say. Parents listen carefully to what we say and to what we dont say. If we say palliative care is an option when nothing else is working then we put a very negative value on palliative care. There is a world of difference between 'may die' and 'will die'. Also, we dont 'deliver' news, we deliver newspapers. We share bad news. Think about the words used, what you need to find out. I prepare to ensure they understand and have imparted to me what they need. It should be planned for as soon as it enters the mind of the health care professional. One child heard that we cannot make the cancer better and the child thought she could live with cancer and go to high school and university, marry and have children. She didnt want to give up but she also didnt understand. We should avoid doctors saying 'We could do everything' - families don't know the 'everything' we can do. Rather than the word "owie" to describe cancer, this is an opportunity to teach what cancer is to the youngest patients and his circle of firends. We can ask what does Jeremy know about where a dead cat is or his grandma. Children of 3 can understand a lot. It is key that children know they are not alone and that parents and doctors will do their best to help. Parents wish to protect children from horrible things. If we cannot protect the children from death then we must prepare them.

Parent, bereaved parent and frequent palliative care speaker Valerie Macdonald began with her own experience: When do we tell parents there child may die? Possibly not at the beginning when we hear there is an 80% chance of a cure.  There isn't a right time. Disclosure meetings were very busy and it was hard for me to absorb information. It is important to check what parents understand. To me, the words 'Phase One Trial' means to the doctors that the child is likely to die. What is often glossed over is what palliative care is. Palliative care is a viable treatment option. Palliative care is supportive therapy. Palliative care is a holistic approach to improving quality of life relieving symptoms and helping the child and the family with the process of dying. I believe there are some treatments that are worse than dying. Palliative care is a supportive treatment that lets the child develop to the best of their abilities in the time they have remaining. 

As participants reflected about the cases and choice of timing and inclusion of young children some very clear points about the importance of the palliative care discussion, barriers caused by staff themselves, and the need for parents to be told over time about the benefits that palliative care offer.

For me a distinction between 'delivery' versus 'sharing' over time a life-threatening diagnosis was important. Beyond the issue of staff who do not speak about palliative care at all with their patients, or who 'wait' until way too late to start to talk about it, there is the issue of a quick delivery that parents will not take in, or may instinctively recoil from, that does not allow time and trust to develop that allows families to value palliative care or palliative care workers.

I wish to thank the panelists for their thoughtful contributions and also thank Adam Starkman of SickKids Foundation for coming to learn about palliative care from a staff and parent point of view.

Adam reflected that there are many examples of family-centred care that he talks to funders about, such as the playroom off the Atrium where siblings can hang out and play and do homework, and the panel showed him that discussions between staff and families to explore palliative care, separately from end of life care, exemplifies family-centred care.