Uncertainly and parent - staff communication : Ian Brown at Sickkids

On Wednesday, Ian Brown shared stories about life with his son Walker to a packed audience of several hundred Sickkids staff. He called for continued work to create an extended community of support, clearer communication by doctors even when facing great medical uncertainty and recognition of the essential equality of the cognitively able and cognitively challenged.

Brown began by noting the appropriateness that Dr Norman Saunders was Walker's pediatrician as it was in Saunders' honor that the Saunders Complex Care Initiative was begun at Sickkids. He then used the opportunity to share challenging experience, prefacing his remarks with the fact that there were only 8 known cases of Cardio-Facio-Cutaneous (CFC) Syndrome in 1996 and in the following years this number has risen to only around 100.

"Complex kids leave you guessing all the time and uncertainty is not something doctors like. Because it makes them feel at the bottom of the class. That explains the little sigh of resignation when we visit the hospital."

"These children are a new genre of human being. Children who are saved by brave and brilliant science... What brave medicine or brave society does is send the child home with the parents to go insane with this new human being.... We wondered why we were never told anything. It took us a long time to figure out they didn't know. And they didn't know to explain this."

Brown contrasted the intimate knowledge of the pediatrician with the many other hospital staff Walker would meet over the years. He couldn't understand "why we kept repeating his history".

One day Brown brought Walker down for an MRI. They had to be at the hospital at 8am, meaning a very early wake up for the family. Brown then follows Walker's every move as he dashes around the playroom and clears any table he can find for 4 hours. At this point they are let in to another room where they finally meet the anesthesiologist who has noticed Walker has a heart murmur and does not wish to proceed with an anesthetic. Brown is incredulous that this would not be known to the doctor. He tells the doctor to please call dentistry as they sedated him two weeks prior for a dental procedure. In the end they return home. "In my humble opinion, a complex care program program worth its name would maintain a central record keeping facility." The story illustrates that in complex care cases, parents typically know more about the details of their child's care than staff meeting the child for the first time.

Brown alternated constructive criticism, often prefaced with "You know I love Sickkids, but...", with over sized metaphors that drew knowing laughs from the Sickkids audience. Brown's main points however should not be missed.

"This is a new human population. The only way to care for them is through an extended community. Maybe they need a dedicated waiting room. Maybe dedicated staff." He called for better communication and remembered an interesting study the family stumbled on. "I didn't hear about the new gene from Sickkids. I wonder why? Why didn't you send me an email saying have a look at this study."

He asked doctors to not lose sight of the family and their often modest hopes amid the medical chatter of confusing conditions. "If you create this extended community to care for this new type of mysterious and very rewarding child, you do not have to be a hero, you just have to be alert."

Brown considers that Walker at 12 has the mental age of a 2 year old and they communicate with little clicks of the tongue. Looking back on the experience, Brown called for parents and staff to premise the difficult work of care upon equality:

"I accept him as my equal. He is not the same. He taught me to communicate through something other than words and logic... It's like a blind date. You never know what will happen. You don't know if you want to go there, but you have to stay in the present."

To Brown, Walker is "frail but not weak" and ultimately he epitomizes that "great spirit matters".

This was a parent presentation that I suspect will be remembered by everyone in the room and will impact on practise in small and large ways to the benefit of many families. It is to the hospital's credit that the tradition of Grand Rounds could centre on the challenging story of Walker Brown and the difficult journey of his family.

The above quotations were transcribed by hand and I have done my best to precisely record Ian's exact words. Any errors are mine alone.

Read more about CFC at CFC International: Caring, Facilitating, Connecting
Read more about Dr Norman Saunder's legacy of care for complex kids

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