make the space for the listening

nothingchange

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.

do unto others

The topic of patient and family engagement is HOT right now.

When I started this work ten years ago, the idea of involving patients and families at the organizational level in hospitals was new in Canada.  A rare children’s hospital might have a Family Council, but that was about it.  Now hospitals and researchers have awoken to the idea of talking to the people who they care for and serve.

This super infographic about Family Engagement was co-written with Karen Copeland, a family leader in the child mental health realm, and founder of Champions for Community Wellness. It is a solid summary for staff of what meaningful engagement looks like to families.

Last night, I had the honour of attending Isabel Jordan’s talk about Patient Engagement at Evening Rounds in downtown Vancouver. As the mom of a child with a rare disease, Isabel had many great suggestions about meaningful engagement of patients and families. Her wisdom included suggestions about involving patients in conferences (via the Patients Included movement) and closing the circle after engagements. She emphasized that patient engagement is really about treating people with respect. Plain and simple.

Last Sunday, the afternoon of the Canadian Family Advisory Network was spent talking about engaging families in pediatric research initiatives.  This means involving families early on in the research, and shifting the mentality from families/children being research subjects to being research partners.

This is a change in doing things TO or FOR patients & families to doing things WITH them.

I think this movement starts at the bedside or point of care, and with acknowledging that patients and families bring their own expertise to health care settings.  This means shedding the hierarchies that are rampant in health care, and for staff and physicians to stop hiding behind their professionalism and graduate degrees and to simply be human beings, plain & simple.

It means treating people as you want to be treated yourself.  It is about human connection.  It is about person to person relationships.  And this starts with listening.

Listening to each other’s stories without rushing, without judgment, without defensiveness, and without assumptions.  It is challenging work to be respectful listeners, because it means we have to examine our own values and understand where our own biases come from.  It is only then we can really listen to patients and families and work with them as true, equal partners in care.

If this sounds too soft, here’s a more practical article that was published in the Health Issues Journal in Australia called:  Meaningful Engagement or Tokenism.  Here, I open with a story about what tokenism in engagement looks like.  Then, I move onto practical solutions that includes ideas about:  scheduling meetings, preparing patients/families, welcoming people, flattening hierarchies, creative outreach and feedback loops.

Engagement is really about treating people like human beings – with respect & dignity and as equals to you.  There is no magic or secret sauce here.  Patient and family engagement is about doing unto others as you would have them do unto you.

it depends…

more conferences in quebec city please!

more conferences in quebec city please

I had the great honour of speaking at the Canadian Family Advisory Network (CFAN) this weekend.

I first spoke about Family Councils – in my experience, what works and what doesn’t work. I’ve posted my lessons learned list here. In the end, I concluded that the answer to the questions: should we have a Family Council? What should it look like? – is: it depends.

Then this morning, I had the great honour of sharing the stage with Christie Oswald, Sarah Topilko (from the Stollery Children’s Hospital), Rita Visconti (from SickKids) and Kate Robson (from Sunnybrook Health Centre) to share stories on a topic dear to my heart – peer support. I handled the ‘soft’ part of the presentation about the value of peer support, with Christie and Sarah presenting on Stollery’s Family Bedside Orientation Project, and Rita and Kate spoke about the important topic of celebrating families and babies in NICU environments.

What does peer support look like for families who have children with medical needs? The answer to that, too, is it depends.

There is not one answer to any of these questions. That is the challenge with this work. No one size fits all. There is no textbook answer. This is because you are working with human beings, and that in itself is challenging and demands flexibility.   People are snowflakes; we are all different, and not one of us are the same.

When I started to be involved in this national work seven years ago, the only people at a CFAN meeting were the families themselves. We were all preaching to the converted about family centred care. Zoom ahead seven years, and the CFAN meeting has considerably diversified – the room was full of families – both paid family advisors & volunteers – young adults, health professionals, physicians and administrators. Word about family centred care has spread beyond families. Let’s keep spreading the message of the power & value of the family voice.

What I like to say about CFAN is if you attend, you will laugh and you will cry. I had so many lessons from this powerful session.

“Joy is contagious,” said Kate Robson, talking about celebrating babies in the NICU, including having holiday parties with Santa and celebrating Halloween with families (hint – small babies can be fit into dog costumes).  Joy is contagious – what a powerful observation.

Some of my favourite take-aways included the notion that just because a program ends, doesn’t mean it is a failure. Not all families are extroverts – and perhaps they don’t want to participate in parties or other social events in the hospital (but some do) – maybe they just need quiet space with beauty and art instead. What dads need for peer support and what moms need can sometimes look very different (hint, not all dads like to bond over sports and beer. But some do).

Again, what should peer support look like? The answer is: it depends. The most important thing is that we remain open-hearted to different ideas and avoid judgments and assumptions. When you are starting up something new, give up on the idea of ‘perfect’ and move towards ‘good enough’. Do not give up. Try again. Do not get so focused on numbers – making a difference to one person is enough.

In the end, our panel discussion was not an expert panel discussion. We had no answers for the audience. The fact is that we do not have the answers. The answers all reside inside of you. You know in your heart what you have to do.

a hospital stay in pictures

who decided we needed first-hand experience at BC Children's Hospital?  Whomever/whatever gave Aaron pneumonia.

Who decided we needed first-hand experience at BC Children’s Hospital? Whomever/whatever gave Aaron pneumonia.

three nights at the hospital.  here is aaron's awesome student nurse, gillian.  he inhaled A LOT of ventolin.

Three nights at the hospital. Here is Aaron’s awesome student nurse, Gillian. She was the best.  He inhaled A LOT of ventolin.

aaron refused to eat.  he told me, 'hospital food is disgusting'.  this picture proves his point.

Aaron refused to eat. he told me, ‘hospital food is disgusting’. This picture proves his point.

his oxygen ranged wildly from 81 to 98.  when he was closer to 98, they started talking about going home.

His oxygen ranged wildly from 81 to 98. When he was closer to 98, they started talking about going home.

feeling better!  discharged friday - lethargic weekend, but dfei

I was SO relieved to have Aaron talking and laughing again.  As Anne Lamott says, there are two prayers:  help me help me help me & thank you thank you thank you. I am feeling very grateful for the care & caring he received. Thank you.

the hospital world according to aaron

Aaron had day surgery IMG_6304today at our children’s hospital.  In an effort not to be a ‘secret shopper,’ I try to take off my family centred care hat when I’m in the hospital with my boy.  I focus on him as opposed to critiquing every single interaction.

Yes, the experience wasn’t perfect – the clerk calling me to confirm Aaron’s time didn’t mention that the entrance to the day ward had been moved in the midst of renovations (so I got a bit lost), I was called ‘mom’ an awful lot, one of the nurses said:  it is so good he’s so high functioning (!?) but overall, the clinical care was exceptional, everybody was respectful towards Aaron, and we were able to go home five hours after we arrived.  That looked like success to me.

My youngest son has had four surgeries in his life, and this was the first time I did not push the pre-sedation request.  Aaron was relaxed and joking with the nurses, so I thought – let’s just see what happens if he doesn’t get sedation before he goes into the OR.  I warned him there would be lots of people and bright lights in the OR, and he was perfectly fine.  (I now wonder if the pre-sedation request was more for me?  Mom needs sedation).  It is fortunate that our hospital has parental presence at induction, which means I was able to go into the OR with him until he was asleep.  I teared up a bit when he was put under, as I always do – and the kind anaesthesiologist said to me:  we will take good care of him.  And that they did.

What is more interesting about this brief experience in the hospital is Aaron’s perception of it:

He was annoyed that he had to wear a dress (see photo above).  Apparently the hospital switched to gowns for kids and don’t use pajamas anymore. He had to wear a mask because he had a cough.  Sensory-wise, that was not great – it was scratchy and bothered him and he kept taking it off.

Despite the fact we explained the going to sleep thing, the first thing he shouted when he woke up after surgery was:  I AM NOT DEAD!  I’m horrified he thought he might have died – I am constantly in awe of how this kid’s mind work.

The day surgery unit was BUSY and unfortunately, some of the kids didn’t wake up well after surgery, and some children were crying. There was also a considerable amount of construction noise – hammering and drilling.  I don’t like hospitals, Aaron told me.  I asked why.

I don’t like these screaming kids! he explained.  He added, the food is disgusting.  I want to go home.   Ask him about his own patient experience, and this is what you get – he is a fountain of truth.

I’m grateful for his uneventful experience.  I’m also thankful for the folks at the hospital who cared for him:  the clerk at reception, the LPNs, the RNs, the porters, the surgeon, the OR nurses, and the anaesthesiologist.   They all had smiles on their faces, spoke to Aaron directly, and did their jobs quickly and competently.  I feel fortunate that Aaron’s experience included such caring health professionals, and that he is home safe and sound.

how to become a family centred care hospital

IMG_6253

Last week, some of my friends from the Stollery Children’s Hospital hosted a lovely evening for me with wine and chocolate.  I left my position there two years ago, but I have been very fortunate to have retained treasured friendships with staff and family members that I met while I was there.  We naturally started reminiscing about how family centred care formally started at the hospital six years ago.

It began modestly, with one leader and one mom.  The leader brought the mom to a senior management meeting, and the other senior leaders climbed on-board.  Four other moms who had experience at the hospital with their children started connecting in coffee shops and in hotel hallways at conferences.  The leader brought in two moms to sit on an interview panel to hire a dedicated Family Centred Care staff member.  There was a Planning Day with the senior executives and five moms.  (Dads became involved later, don’t worry).  A deadline to start a Council was set.  Council recruitment began, and out of many wonderful candidates, both a Council and a Network was born.  A specialized NICU group started up.  The work began slowly, with successful family presentations to staff audiences.  A newsletter was established to keep everybody informed about volunteer opportunities.  Staff who were champions in family centred care were encouraged and recognized.  Family representatives showed up on hospital committees, more interview panels, and capital design projects.   They began reviewing policies and educational materials.

During this time, the sharing of family stories at presentations continued.  The family experience become more understood by staff and physicians through this storytelling.  (I believe that compassion in health care comes from this understanding).  Families partnered with staff to present, and began understanding the staff perspective, too.  Families spoke to students, to influence young minds early.  Families came to management meetings.  A strategy day was held, with fifty participants.  Priorities were identified to help guide the work of the family centred care staff, which was growing thanks to Foundation support, and successful grant applications.  Some priorities were harder to implement:  like peer support, and transition to adulthood.  The staff and family reps did not give up.  The good work from the hospital slowly began to be communicated outside their walls – at national and international conferences, in the media, and in written articles.  Research and evaluation initiatives began.

Last year, family representatives put in over 1,500 volunteer hours to advance family centred care at the Stollery Children’s Hospital.  There are currently 128 family members and 284 staff on the Network.  The culture at the hospital has changed – the family voice is more consistently respected and heard throughout the entire facility.  Families are included in conversations both about their children’s care and at the operational level.  Staff and physicians are celebrated for excellence in family centred practice.  The Stollery Children’s Hospital is now a family centred care hospital. (For more details about the family centred care work done this past year, check out their annual report here).

I was that first mom six years ago who worked with that first leader, whose name is Laurene Black.  We are both passionate and stubborn people.   Laurene was at my party last week.  She’s one of my true mentors; I have learned so much from her. She’s now moved onto making change in the challenging world of children’s mental health services.  I’m moving to Vancouver to be the Family Advisor at Sunny Hill Health Centre for Children.

The hospital’s family centred care work so long ago quickly became more than just the two of us – and that’s how it should be.  It continues today with great momentum and flourish, thanks to the unwavering hard work of Heather Mattson McCrady, Christie Oswald, and dozens of staff and family volunteers. Nothing stays the same, but the good work continues on.  As Laurene likes to say:  just keep your head down, folks, and keep going.  

Thank you Laurina, Karen, Marni, Tiffany, Heather, Laurene, Shelley and Karen for my celebration.  I feel very much loved.  I’m in awe of the work you’ve done, and excited to see what the future holds for us all…

 

 

 

the toronto speaking tour

toronto1

The Distillery District in the rain. Photo courtesy of Lisa Hawthornthwaite.

I had a whirlwind tour of Toronto hospitals, with four speaking engagements in three days.  The thing about multiple presentations?  You just can tackle them one at a time.  It helps to have thorough discussion with organizers about what they are looking for, an understanding of the audience, writing and re-writing speaking notes, and lots of timed rehearsals.

My highlights were:

1.  Participating in a storytelling panel at the Canadian Family Advisory Network Workshop with Bloom editor Louise Kinross and Dan Yashinsky.  Louise talked about narrative medicine, and the importance of clinicians telling their story.  As a professional storyteller, Dan shared his Talking You In project, which is a beautiful initiative that combines storytelling and music to honour parents and babies who have had an NICU experience.

2.  I was so thrilled to spend the day hosted by Kate Robson at the Sunnybrook Health Sciences Centre.  I spoke about the Art of Storytelling to their patient and family centred care champion group, and presented about Sharing the News:  Disclosing Diagnosis to their NICU staff and neonatologists.  I loved seeing Kate in action as the Family Coordinator in the NICU.  She has such positive energy and a listening presence.

3.  There was an awesome turn-out at my session at SickKids NICU, which was about the Art of Health Care:  Nurturing Relationships with Families.   The NICU has embraced peer support, and have recently hired a lovely Parent Liaison, Rita Visconti, who works with the families who have very sick babies in the Neonatal Intensive Care Unit.

I’m like Dorothy from the Wizard of Oz when I travel to Toronto:  Toto, I have a feeling I’m not in Kansas anymore.  This is one big city.  Connecting with all my old and new Toronto friends left me inspired and motivated – and hopeful that the hospital world is changing for the better for patients and families all across Canada.