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

Dr Chris Feudtner at Sickkids on "Partnering Leadership in the Care of Children with Complex Chronic Conditions"

Dr Chris Feudtner works with the Paediatric Advanced Care Team (PACT) at The Children's Hospital of Philadelphia, tagline "Hope lives here." He began, in reference to Ian Brown's presentation on Walker and their family experience, "I profoundly affirm what we just heard...If you let the universe change you, you can go places you would never expect."

Here is my highlight reel of a wide ranging look at professional-patient-family communication, followed by further examples.

"I believe in family centred care but we need to have the family and the staff pull together in a kind of partnership. ...What is desperately needed among this community is a sense of where we are going to go... When the train goes off the rails it is because of decision making problems at the top. We need strategy more than tactics. There always will be uncertainty. It's essential to think about what we are aiming for with risks. ... Once mindful, it is easy to see we are working on our own problems, we never go upstream to ask if we are on the same page. ... Parents are paying attention to how well we do this. ... What about emotional management strategies. We are constantly managing it and often mangling it. ... Stories are how we make meaning. I see palliative are nodding. Shared meanings and shared purposefullness. ... We need shared decision making and partnering leadership.... We need to shift from delivering difficult news to having a learning conversation....The most common proceedure we do at the hospital is talk to families."

Reflecting on the title of his talk calling for "partnering leadership", Feudtner joked that he could imagine eyes rolling when he mentioned 'leadership' as in "Oh my god, not leadership." He confirmed his belief in trials, statistics and evidence based research, particularly from the realm of palliative care, but emphasized the need for professionals and staff to get on the same page. This could start with a simple question like "Do we try plans that are off the care plan?" or "Ask, what are you hoping for with this admission?".

From his work in palliative care, "We talk in the language of hope" and it is important to ask about hopes; the answer may be as simple as 'I hope for a little more rest'. Studies show that patients want ready access to medical professionals and emotional expression: "It's about relationship and information exchange, not a miracle."

"One of the best ways to live a long time is to get a palliative care consult. And I am not entirely joking; it can help with iatrogenic issues [adverse treatment effects]..."

"Doctors and parents hopes are not on the same page" nor are their views on quality of life. "We find out that doctors and parents don't hope for the same things. This is very remediable." "Doctors are paid to be competent but parents are emotional" so professionals can constantly reconsider how they relate to a patient and ask how they can do it better. "Parents are uncertain and may feel unsupported but they feel their values are clear and if they make a choice they feel empowered.... Parents rank concerns as beyond organs..." Its important to deal with the great uncertainty. "We often don't know baseline status, so I ask parents to bring in pictures so they can see the child when they are not comatose. We don't know the baseline of recovery or how long before the next episode." In such circumstances, he thinks asking parents to graph where they see quality of life makes no sense. "These kids are like playing in traffic... It really helps if we doctors can say 'I wish I knew but I don't'". He imagined the audience thinking "You just lost a lot of street cred" and suggested "I gave up being a hero. Be close to the bone. Parents don't look less at you."

Feudtner called for professionals to couch diagnosis with concerns rather than probabilities and to question proceedures. "What is the purpose of the MRI? Coordination is also about saying no sometimes. We don't need to... What is important is not only what you hear at rounds but what you hear from families." Describing the problem solving as "not linear" and "like solving mazes from within" where the best strategy is sometimes thought to be 'always go in the same direction' until you get stuck in a blind loop, Feudtner highlighted: "We need shared decision making and partnering leadership." While a fan of Evidence Based Medicine, EBM is not his only guide: staff need to clarify, interpret (and anticipate), prioritize and bolster patients, starting with an invitation: "Ask, how can I be helpful?" To Feudtner this question is "more than a courtesy, it's a commitment".

Feudtner's three commitments to patients are: "I will be straightforward. If I am worried I will let you know. And I will not make a promise I cannot keep." He emphasized that patient and family emotions change. "Our families are terribly charged with negative affect. They have good reason to be sad. But they also have a great deal of positive affect. They are jazzed about their child. They have strong positive and negative affect. They don't want a polyana-ish reponse, just respect... Why trust parents to make decisions for kids. Because they have these strong ties and polyvalent feelings."

Feudtner noted that in partnering leadership, a key element "is neither abdicating nor appropriating" hope. When discussing hopes, you can simply ask "What are you looking for?" and be more comfortable with a discussion along the lines of, "'I wish it was possible that the cancer goes away'. 'What else are you wishing for?' 'I want to go home to spend time with family.' 'I can help with that'." There is no need to extinguish hope or be negative about alternative therapies and keep in mind there "are a variety of hopes."