I’ve learned so much these past ten years in my work in patient and family centred care. My lessons come from this funny learning loop: my naivety is shattered, I feel deeply humbled and then I recognize how much I don’t know. Working in the world of pediatrics, the clinicians tell me how family centred they are, but then many families sadly shake their heads and tell me otherwise. This is disheartening.
I’ve come to believe that the care is generally child-centred, but health professionals aren’t sure what the hell to do with these crabby, stressed, fearful families who come along with their sick children. Us families are self-professed pains in the asses, as that is our primal job – to protect our children at all costs.
There’s so much talk and very little walk about truly involving patients and families, except by a few lonely champions. This needs to change. I believe that the core of all work in health care is compassion. And compassion comes when you take the time to understand another person’s perspective. And people share their perspectives, not through data (which is so loved by clinicians) but through stories. Real people communicate by telling stories.
Nobody has time for stories at the bedside. Bureaucrats create policies to limit access to programs. Wait lists never end. Once you are finally in the health system, people rush in and out of patient rooms at great speed. Technology takes over for the human touch. Efficiency is held up as king. The bottom line for administrators is costs, not care. With the explosion of knowledge, health care is fractured into more and more specialty areas and people are categorized by a pecking order of diagnoses instead of by vulnerability or individualized need.
The antidote to all this mess is to make the time to slow down, sit on the edge of the bed, put your hand on the patient’s hand, look them in the eye, ask what matters to you and then sit back and listen. Simply listen to understand, openly and without judgment. As a wise physician friend told me, find out what keeps people up at night. What is their hidden concern? It is then, and only then, will the care in health care begin.
Listening can happen at both the bedside and at the organizational level, too. But nobody has time for patient stories in rounds or during meetings or at conferences either. The deep irony is that it is the patients and families who know how to make health care better – you just have to give us a chance. But you must make the space for the listening.
Yesterday I was given a great gift. It was the gift of time with thirty pediatric residents. One of my champions is a beloved pediatrician. Her heart is fully with the children and families she cares for and serves. There was a window in the schedule for these residents and she grabbed it – creating a rare half day teaching opportunity for families. I was honoured that family leader and mama bear extraordinaire Isabel Jordan collaborated with me at the podium. We talked about partnering with families and best practice in sharing the news/disclosing diagnosis. The residents – who I’m sure were exhausted from the pace of their training – listened raptly to us moms standing at the front of the lecture room. They were good sports to participate in our ice-breaker, they asked respectful questions throughout and then at the end, they graciously thanked us for our candor, our passion and our time. Afterwards, amongst themselves, they talked about ways they could improve the hospital experience for families – by caring for their own hearts, revisiting how family centred family centred rounds actually are, and making more time in their frantic schedules to talk about disclosing diagnosis well.
I cannot how thankful I was for this time with these young clinicians. I cannot express how impressed I was by the calibre of this new generation of physicians. In the sanctity of that lecture hall, we were all just people, no longer ‘doctor’ and ‘mom’ – the residents, eager to make the world a better place than when they found it, recognizing our desperate need for improvement, and us moms shining the light to show them the way.
Health care and academic leaders, let your guard down and allow yourselves to be vulnerable enough to let patients and families into your hearts. Vow to never have another patient centred care conference (irony alert!) – or any conference – without patients fully involved. Invite families to share stories at staff orientation. Add us to the curriculum to teach health faculty students. We want to help you. We are ready – just give us a chance. It all comes down to this: simply make the space for the listening. (Bonus points if you actually make positive change based on what you hear). This listening space is the spot where the great transformation of health care will begin.