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."

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