Ian Brown and L'Arche

Ian Brown has written about Walker and you can read web excerpts of "The Boy In The Moon". Brown's public quest to understand Walker, his relationship with Walker, and his difficult decision to put Walker in an institutional care setting lead to a dialogue with the L'Arche community founder Jean Vanier about the challenges and rewards of living with the profoundly differently abled. Read about the genesis of what L'Arche Canada called "an inevitable encounter".

Brown's "Doing the Work of the Heart" (now requires paid access) was a first introduction to many of this dialogue and is an amazing article. I found a lovely excerpt:

Ian Brown writes, "I said: 'I have a language with my handicapped son, who can't speak, where I connect to him by clicking my tongue.' The whole half-assed idea just came blurting out of me. 'And he recognizes it, and sometimes responds. Sometimes that feels like praying to me.'

'That is praying,' Mr. Vanier said. 'You see, praying is not doing. It's a moment when we're clicking. A lot of people don't know that. And because they're not going to church on Sundays, they feel guilty. They don't know they're praying. Through compassion. Through peacefulness and thankfulness for who you are. For the body you have, for the age you have, for the family, for the flowers that you see outside. Gratefulness. Prayer is communion and gratefulness.'

'So prayer,' I said, 'is a way of reminding ourselves' '- to be who we are,' he said."

From Passage Des Perles

Ian Brown & Dr Chris Feudtner discuss staff-parent partnership for children with complex chronic conditions at Sickkids

"Partnering Leadership in the Care of Children with Complex Chronic Conditions"

Ian Brown & Chris Feudtner, MD PhD MPH

October 8th, 2008, 9:00am – 10:00am EST

SickKids Main Auditorium (The Hollywood Theatre)

How can we improve the medical care provided to children with complex chronic conditions and their families, especially when we have to make major decisions in the face of uncertainty? This presentation considers the role that partnering leadership, between parents and health care professionals, can play in answering this important question.

Ian Brown is a renowned reporter who authored of a series of articles in The Global and Mail recounting his experiences of his son, Walker, who has a rare genetic disease; an expanded version of these articles will appear in a forthcoming book, The Boy in the Moon. He is also currently the host on TVOntario of Human Edge and The View from Here.

Chris Feudtner, MD, PhD, MPH, is assistant professor of pediatrics at The University of Pennsylvania School of Medicine and attending physician and director of research for the Pediatric Advanced Care Team (PACT) and the Integrated Care Service (ICS) at The Children’s Hospital of Philadelphia (CHOP). In these roles, Dr. Feudtner both provides care to children with complex chronic conditions and investigates ways to improve the quality of life for these children and their families. He has also the Director of the new Department of Medical Ethics at CHOP.

Learning Objectives:

1. Define the role that partnering leadership can play in guiding and improving complex care.
2. Recognize how uncertainty and emotion influence decision making
3. Describe 5 simple methods to enhance partnering leadership

Grand Rounds sponsors: Sickkids, Sickkids Palliative Care, Tele-Health

Parent Charting : a family-centred breakthough whose time has come

I recently joined the PFACNetwork, an email list serve for staff and parents involved in family advisory work. As part of the new NICU family care committee I undertook to gather information about parent charting, which is the involvement of parent's in their kid's hospital chart. This involvement can extend from helping nurse's observe and measure liquid output to being responsible say for occupational therapy 'scores' for your child to direct parent input of data into the electronic care plan. In my dreams, I imagine a time that a parent can click on a link, enter a username and password and hit Comment. Up pops a little field into which the parent writes about positive moments and challenges, questions, reflections etc. Now the parent's thoughts are recorded forever beside those of the staff.

I was grateful to Joanna Kaufman, RN, MS, Information Specialist at the Institute for Family-Centered Care for recommending the article "A hospital takes up the challenge of offering patients open access to their charts as well as directing me to Dr Ted Eytan's blog focused on electronic health record issues. What becomes quickly apparent is that the main focus of parent charting is on the 1) the desire by adult patients to access a portable electronic chart that they have more control over 2) leading to a range of new services offering online charting, from Revolution Health to Google amid 3) perceived time savings and increased accuracy as medical staff update electronic charts in real time.

That "parent charting" in a paediatric setting is still in its infancy is confirmed by a 2005 study that interviewed nurse managers at 61 U.S NICUs to learn about parent participation in a range of NICU activities and which reports:

"Sixty-two percent of NICUs routinely allow parents to be present at medical rounds; 33 percent do not; and 5 percent allow it some of the time. Of the hospitals that allow parents to be present, 76 percent encourage parents to participate in the discussion while 13 percent report participation is physician dependent. Only 26 percent of the NICUs have a written policy regarding parent presence or participation in medical rounds. Substantially fewer parents participate in nurse shift changes. Only 25 percent of hospitals indicate parents are routinely allowed to be present, while 13 percent allow it some of the time. Few units encourage participation in shift change discussions. Parents are allowed to read their child’s medical record in 91 percent of responding NICUs. However, an overwhelming majority of units require or encourage parents to have staff present when the chart is read. Only 3 percent of NICUs allow parents to enter notes in their child’s record. (emphasis added)" ("Family Centred Care in the NICU", Children's Hospital's Today, Winter 2005, Mitch Harris, George Little M.D)

Institute for Family Centred Care training seminar in Calgary - October 27-30

I have been negligent in not writing up the wonderful work of the Institute for Family-Centred Care whom I reference in the parent charting notes. I was amazed to get through to one of the advisers / staff on the phone immediately and she then put me in touch with two other advisers with relevant experiences in other hospitals.

The IFCC will travel up from Bethesda, Maryland to hold an intensive training seminar in Calgary from October 27-30, 2008 titled Hospitals and Communities Moving Forward with Patient-and-Family-Centred Care: An Intensive Training Seminar Enhancing Quality and Safety for Patients and Their Families.

Their latest research effort is the 178 page PDF titled Partnering with Parents and Families ... Recommendations and Promising Practises.

Their Resources section offers a wide range of free downloads and for fee booklets focused on family centred self-assessment and support for parent involvement and family advisory.

Two beautiful days in the life of The Sasha Bella Fund

Yesterday I sorted the envelopes on my desk and saw a thick envelope addressed to The Sasha Bella Fund for Family Centred Care. Inside was a letter from a Toronto lawyer I have never met who wrote that an out of country client had to make restitution and the lawyer thought it most appropriate to help us help family centred care at Sickkids. I turned over the letter and there was a generous cheque. Then, amazingly, several hours later another lawyer called me to tell of an emergency. She had to make a donation for client restitution and wanted it to go to Sasha's fund but needed the receipt today. Could I pick it up? Happily I took this unexpected bounty to Laurel Shillingford at the Foundation where I learned that charitable donations as a part of court ordered restitution are so common there is a tick box for them on the Sickkids Foundation receipt. So ... please mention Sasha's fund to your lawyer friends.

Then this morning I bumped into Treasa and got a very quick update about our Sing! Move! Play! child-parent music group. She mentioned that after playing to groups of various sizes in several venues, Child Life has arranged a semi-permanent venue in Oncology. Then her eyes glowed and she told me that last Friday's session was the best session. A little girl in Oncology was crying, uncomfortable and didn't want to be there. By the end of the session, this little girl was laughing and momentarily transformed. Thank you Treasa. Thank you Sickkids. Thank you to the bad guys who have to make good.

Michael Redhill : "We Saw Stars In His Eyes"

"We sat in the brightly coloured atrium of the Hospital for Sick Children and rocked back and forth, weeping in terror, and promised him, from the terrible distance that separated where we sat and where they punctured him, that if he made it through this, he'd have a free pass until he was 18." So recalls Michael Redhill in the aftermath of his first born's spinal tap at three days old. Looking back nine years, "I Saw Stars in his Eyes" subtly explores parenthood, fatherhood and that "dark knowledge" that can emerge from a child's health crisis.

In a beautiful metaphor, his fatherhood grows as a concept alongside his partners belly, he lays out unvarnished parent- staff angst ("One morning, I had to be held back from attacking a nurse who was being too businesslike with him. Maybe I had the right kinds of instincts after all.") and offers a deep meditation on how the act of birth signifies death and how love and grief are one.

"She puked through the whole pregnancy. It was supposed to be "healthy," but I couldn't help seeing it as a response to an existential problem. Having a child is sowing the seeds of your own obsolescence: birth is the fuse that leads to that other thing. You appear, you replace yourself, you die. I had preferred to see myself as outside the swim of the normal process of things. As a younger man I'd imagined an unmarried life, unfettered, an artist without ties. Now I lay abed in the mornings with my pregnant partner as she groaned for crackers and cantaloupe, and I knew I was forever on God's radar. It was good to be found."

After describing surreal moments as his son totters between life and death, Michael moves from humor to "dark knowledge" that, in the normal order of things, those we bear will bury us.

"He's going to be fine, they told us. It was nothing. These things happen. They kept him another night to get the full dose of the antibiotic into him, just in case, and then they sent us home. I filmed us taking him into the house, fully ours at last. But I was so out of it that all I have of the momentous homecoming is a full minute of my mother-in-law's bottom moving up the stairs. She had the baby in her arms. But in the film I can hear him. He's cooing. The last moments before he arrived, when his head was out and only Anne's last pushes were to come, the awareness washed over me that mere instants separated me from the last moment in my life when I wasn't necessary to the first moment when I was. This thought frightened me, as I imagine it should frighten any sensible person. You can love those who are going to leave you – either because they precede you or because they can leave you if they choose to – and you can love in the dark knowledge of this. Your parents will die, your loved ones may suffer a change of mood and move on. But to begin to love someone you know you will leave, because nature must have it so, is a very heavy thing indeed. Here came the boy who would bury me. Whom I would love for the rest of my life, but not for all of his. I was bringing him into future loss. There is nothing more beautiful or dreadful than this. And then someone seemed to ask me, Are you sure? and held him away from me. Yes, I said, I am sure. I'll give my life."

This Dad reminds us that it is in the broken, grieving, scared and trusting heart we find something akin to a secret Sickkids handshake, a deal with whomever we take solace from. Every Sickkids parent knows that terror of loss, leading to those promises in a personal search for salvation.

Michael, thanks for your exploration of life and death and fatherhood and Sickkids: I wish your family the happiest of new years. And in the spirit of your telling, I wish in the most fullness of time that your heavy fear you bore a child who will bury you will come true. And thanks for ending where we begin our blog each day, that it is family-centred care, at its most fundamental, that provides support for the family's love amidst its greatest grief. "I often wish I could go back to our younger selves, paralyzed with fear in the cold atrium of Sick Kids, and reassure them that their son would be making a hell of a mess in the kitchen in 2007, but we wouldn't have heard; we were inconsolable and unreachable. Love kept us whole those days, nothing else."

Read the full article here.

Canadian Patient Safety Week 2008 - "Knowledge is the Best Medicine. Ask. Talk. Listen."

The Canadian Patient Safety Institute celebrates September 25th to October 4rth as their 4rth annual Patient Safety Week.

"Canadian Patient Safety week is an annual event to keep the issue of patient safety at the forefront in Canada. It is designed to raise awareness and increase dialogue about patient safety issues, related programs and projects happening across Canada. First launched in 2005 and held each Fall, Canadian Patient Safety Week is an initiative of the Canadian Patient Safety Institute."

For more information, visit CPSI Patient Safety Week releases or the Canadian Patient Safety Week 2008 webpage.