two steps backwards

See when it starts to fall apart
Man, it really falls apart – Tragically Hip

I am watching across Canada as the patient and family engagement movement in hospital settings is taking two steps backwards.  Councils are being disbanded, patient and family staff members (whether they are paid or unpaid) are resigning or being forced out of positions and are being replaced with clinicians.

There is a real fragility that underlies the patient engagement movement.  If patients and families behave themselves, then all is fine.  The minute there is a change in leadership, or something gets hard – like an ethical issue comes up or there is conflict – then BOOM it is over.

It seems as if this movement is so precarious that it can only survive when things are going well.  I define going well as: patients and families mirror their behaviour as close as possible to the behaviour of clinicians and administrators. We must dress like them, talk like them, show up when they tell us to and agree with them. Of course, this erases any hope for diversity and leaves the pool of engaged patients university-educated, articulate and economically well-off, just like the clinicians and administrators themselves.  Patient engagement quickly becomes doomed the moment there’s a sniff of any difference or contention.

There is now a trend throughout the country to replace paid families or patients with health care clinicians in patient engagement roles.  I think this is because:

  • The patient/family engagement movement has become too successful.  We have amassed too much power in the eyes of administrators.  This, ironically, means that engagement has become no longer tokenistic and is finally meaningful.  But to have power you have to take power – and administrators and clinicians simply aren’t willing to give their power away.
  • Paid family members and volunteers are not ‘professionals’ (nor should they be, especially if people are truly looking for diversity) but health care is built on the structure of professionalism.  Having laypeople make decisions in ways that are not tokenistic is just too much for most bureaucrats.
  • The way patients/families are treated at the organizational level mirrors the way they are treated at the point of care.  If there is bad morale and low patient satisfaction at the bedside, then efforts in patient engagement at the organizational level will suffer too (and vice-versa).
  • Many people in senior leader positions do not understand the role of families/patients in organizations.  They might understand the bedside engagement, but the patients in organizations concept is new and poorly understood.
  • Health care culture is also exceedingly slow to change to new ways of doing things.  Patient engagement at the organizational level shakes the status quo. In the Canadian health care system, the status quo does not wish to be shaken.
  • Patients or families in paid positions, on councils or committees do not have a common job description, standard training or defined core competencies. In other words, they are not regulated in any way.  The health care environment is one that demands structure and regulation in order to gain credibility and respect.
  • Patient engagement still butts up against some professions and threatens them (I’m thinking of those clinicians who think it is their job to advocate for patients, not the job of patients and families themselves).

Replacing patient and families with clinicians swings the pendulum back to where we were 15 years ago.  Clinicians are now speaking for us instead of creating environments where we can speak for ourselves.

I’ve laid out the reasons for this problem and will continue to ponder solutions.  I would suggest that patients and families first abandon any tokenistic work right now and search for the rare environments where true engagement is still happening.  Be picky about how you spend your time.

For instance, my colleague Isabel Jordan has found success as a family partner in the area of research.  While some hospitals still have the reputation of being champions in patient and family centred care, meaningful engagement in the hospital world is becoming rare.  If you find a place where you are being treated as a respectful partner, hang onto them tightly.  These scarce places seem to be going the way of the dinosaur.

It is time for patients and families to regroup and rise up again on our own and abandon the shackles of the health care system.  How do we do this?  I think the answer lies outside of the system, not within it.

One thing we can do is to keep telling our stories on our own platforms instead of politely waiting in the wings for conferences, hospitals or universities to extend us invitations to share our experiences.   Use your voice now.  While the system now seems to prefer that professionals take over speaking for us, never let them steal your story.  Your story is the one thing that is yours. Protect it fiercely.  Now is the time for us to take our power back and we will rise up again, one story at a time.   xo.

Edited to add:  I’ve written about both best practice + poor experiences in patient engagement here: here, here, here, here, here, here, here, herehere, here. 

shut up and listen

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Toronto in November

I haven’t travelled by myself since my cancer diagnosis in February.  I’m partially healed (at least physically) now that some time has passed I took the opportunity to attend a child health research conference in Toronto last week. I’ve felt exceedingly vulnerable and reliant on my husband these past few months and I was nervous about travelling solo.  (Thankfully, I had many people in Toronto caring for me:  I’m grateful to Beth, Frank, Donna, Yona and Kate for treating me to meals and their warm company in the evenings).

I’m on CHILD-BRIGHT’s Citizen Engagement Council and had my expenses paid to attend the Brain-Child-Partners Conference.  For the first time in forever, I was at a health conference as a participant, not as a speaker.

I’ve stopped accepting speaking engagements altogether for many reasons:  I’m trying to build up my courage again. I’m figuring out why I speak – my intention – am I speaking for healthy reasons, or just to feed my fragile ego?  I’m also channelling all my depleted energy into my book project.

Being in Toronto as a participant gave me a new perspective on conferences.  If I’m a speaker, I’m all wound up in myself with anxiety before my talk and then I’m hyperalert for feedback afterwards.  This is both a distressing and exhilarating way to be.  Because I’m thinking about me, me, me all the time, I don’t take the time to shut up and actually listen.  Last week in Toronto, I finally simply sat and listened to what others had to say.

The Brain-Child-Partners Conference was unique in this way:  there were at least a dozen family and young adult speakers sprinkled throughout the first two days of the conference.  I had never seen such a variety of speakers, particularly at a research conference.  CHILD-BRIGHT itself is a huge collection of projects that has engaged over 50 families and youth to guide their research.

This conference could have easily self-accredited to be a Patients Included conference with a few adjustments – offering a webinar option for those who couldn’t attend and having scholarships for patient/family attendees.  Certainly the room was stacked with patients and families in the audience.  Most conferences I’ve attended have had a lone token patient speaker (sometimes me) – which is not diverse or representative in any way.  I never felt comfortable with that.  When I’m speaking again, I’ve vowed not to take on any future engagements for conferences that aren’t Patients Included and who do not have a wide representation of speakers.

Here are snippets of what I learned when I finally shut and up and listened.  Many of my insights came in the form of questions to think about.

1. Fix is a word I’m fixated on, admitted Jack Hourigan. She challenged the audience with the question:  How do you feel about the idea of fixing our children’s brains?  What followed was a thoughtful conversation about the point of therapies.  Does intervention have to end for acceptance to begin?

2. I was struck on the reliance on ‘apps’ as a solution to health care problems.  This reminded me of an experience  I had at a Hacking Health event – sometimes the best solution is a human solution, not a technological one.

3. There was a lot of talk about the system needing fixing.  We should never forget that we are all the system.  The system is made up of people, and that’s us – both patients and researchers alike.

4. I wondered how the researchers felt about the balanced ratio of patients/families to researchers at the conference.  I think of this as a quota situation:  the patient and family voices have been excluded for health conferences for so long, it is time for some catch up.  But one health administrator asked:  well what about my voice?  Is the inclusion of patients excluding others?

5. Cardiologist Ariane Marelli shared insight into her years of working with families who have children with congenital heart disease.  What I’ve learned working in medicine is to help families manage uncertainty, she wisely said.  There were many clinicians and researchers there who clearly cared compassionately for patients and their families.

6. If you want to know what youth thinks, just ask them, offered a young audience member named Jessica Geboers in a Youth Engagement Workshop.  (Note:  Jessica is a writer too – check out her perspective on the conference here).  Sometimes the simplest solution is the hardest one to actualize.  Just ask them.  That’s a good mantra for patient-family engagement.

7. 
Jennifer Johannesen‘s talk deeply challenged the conference participants.  She asked are patients valued by researchers only for symbolic reasons?  For us patients and families, she offered, don’t allow flattery to prevent you from asking important questions.  There was lots to chew on – the full text of her talk is here.

8. To me, this conference boiled down to:  how can we each give up power to partner together?  How do we create a sense of belonging for everybody?  How do we ensure that everybody has a voice?  How do patients not get overshadowed by caregivers?

9. Related to that is diversity – and despite having family representation, this group did not reflect the diversity that is present in a hospital waiting room.  There was a lack of youth voice (having the conference on a weekday doesn’t help for school-aged youth). We were a homogenous group:  mostly moms, university educated, upper end of the income bracket.  As Jennifer Johannesen pointed out – whose place are we taking?  We must make room for other voices, in innovate and creative ways.  The most obvious solution to this is not expecting people to be able to take time away from their work/families to fly to Toronto to attend a conference.  We must go to the people and not expect them to come to us.

10. Here’s a gentle reminder to all speakers.  It is difficult to be both a scientist and an excellent communicator.  I watched Dr. Christine Chambers’ exceptional talk about the It Doesn’t Have to Hurt Campaign.  Christine herself is a rare and engaging speaker – she is funny and warm – but she also worked with a graphic designer to create her slide deck.  I wish for all researchers to partner with communications folks to share their important information – and to ban the dreaded ‘reading bullet points off the slides’ approach.  Or at the very least, I’d recommend reading Presentation Zen to pick up some tips about designing slides and delivering talks.  Never forget the power of stories – audiences remember human stories, not data crammed onto a slide.

Finally, here’s my plea: If you are a health conference organizer, please seriously consider including patients and families as speakers and participants.  As patient speaker Symon Hay said about the Brain-Child-Partners conference, this is the start of something new – where our voices matter.  Embed diverse speakers in your program as opposed to offering a separate patient theme or segregated day.

True partnerships between patients and health care professionals will only happen if we see each other as human beings, not as titles or roles.  This means being human at the point of care, in boardrooms and at health conferences too.  This is a concept whose time has come.

on one hand, the butterflies

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This quote from Maria Shriver is a reminder not to be afraid of being afraid. In fact, the most courageous people are afraid. If you are a patient and family speaker and you find yourself behind a podium, you will feel anxiety and that is ok. This means you are about to do something daring, something so great that so many other people are terrified of doing. You’ve overcome your fear to climb up onto the stage and that’s what really matters.

Brene Brown says, “if you fail, at least you will fail daring greatly.” In her book Daring Greatly, she deconstructs the great Teddy Roosevelt speech to point out that it is not the critic who counts, it is the (wo)man who has dared to enter the arena.

My son is a drummer in a punk rock band. He has played countless gigs in a mash-up of venues: basements, garages, clubs, halls and festivals. I once asked him: “aren’t you nervous before you go up on stage?” and he looked at me as if I had three heads.

“I’m not nervous, Mom,” he said slowly, so I could understand. “I’m excited to be playing.”

Ah. There are so many dichotomies with public speaking. This is true for all speakers, but especially true for patient and family speakers.  We have so much more skin in the game, because sharing personal stories from health care makes us so very vulnerable.

One on one hand, it is normal and even expected to be nervous. On the other hand, why label your feelings in a negative way? Instead of being anxious, why not reframe and rename these butterflies as excitement? I have no answer to this, as I continue to drive white-knuckled to speaking engagements while still accepting and even seeking out these same engagements.  On one hand, nerves give you energy, on the other hand, nerves make you nervous.

For patients and families sharing their stories, more dichotomies ensue:

On one hand, prepare thoroughly and on the other hand, don’t appear too scripted because you will come off as robotic.

On one hand, know your material well and don’t read your words, on the other hand, it is impossible to memorize 30 pages of speaking notes.

On one hand, showing emotion is good, but on the other hand, don’t burst into gasping, sobbing tears.

On one hand, connect with your audience using humour, but on the other hand, don’t stand up there and be a cheerleader.

One one hand, be self-deprecating to show humility, on the other hand, don’t be too apologetic.

On one hand, share negative stories, but on the other hand, do it constructively and don’t scold the audience.

On one hand, allow yourself to be vulnerable in the telling of your story, on the other hand, be respectful to all hecklers even if they are being total and complete jerks.

On one hand, your story is the most transformational element of many conferences, on the other hand, don’t you dare presume to ask for money for that speaking engagement.

On one hand, don’t be greedy and ask for too much money, on the other hand, don’t undervalue yourself.

On one hand, show passion, on the other hand, don’t come off as angry or hysterical, especially if you are a woman.

One one hand, tell the truth, on the other hand, don’t offend your audience.

On one hand, it is your message that’s most important, on the other hand, how and why you deliver that message is more important.

On one hand, the soft stuff is inspirational, on the other hand, where is the data?

On one hand, you can only speak on behalf of your own experience, on the other hand, try to speak on behalf of all patients.

On one hand, nobody cares how you look, on the other hand, don’t dress too casually (sign of not taking this seriously) or too formally (do you think you are better than those in the audience?).  Don’t wear jangly bracelets, stripes or big florals, or all black so you look like a floating head.

On one hand, don’t worry, your video will work, on the other hand, the technology guy isn’t answering his page.

On one hand, humans are not perfect, on the other hand, there will be a member of the audience counting all your ‘ums’.

On one hand, being a ‘mom’ is enough, on the other hand, play up any professional background you have to ensure credibility.

On one hand, not everybody will get your message, on the other hand, that guy asleep in the front row is disconcerting.

On one hand, is this worth all the stress and sweating, on the other hand, it is only through sharing our stories that we are going to change the world.

Bravo and brava to all those patients and families standing in front of a microphone to inspire positive change in health care (and also the education world).  I bow deeply and tip my hat to you – keep talking.  Keep grabbing that microphone.  Keep using your voice. Keep accepting those engagements.  Keep asking for a fee.  Keep asking if conferences are #patientsincluded. Keep feeling scared, but keep taking a deep breath and keep showing love for your audiences.  As Mary Pipher says, this is where the transformation begins.

behind the boy in the moon

I wept during Ian Brown’s plenary talk on Tuesday at the CAPHC conference. Big wet tears leaked through my mascara. I stopped myself just short of audible sobbing.

Towards the end of Ian’s closing words, I peeked at the audience around me. To my surprise, they were crying too: researchers, academics, administrators, physicians – those of impressive titles, but all people too. I pulled my tissues out of my mom purse and passed them around my table.

I knew why I was weeping, but I wasn’t clear on the reason for their tears. I am the parent of a young man who has an intellectual disability. I, too, have a little dream of a community of love for Aaron, like Ian’s dream for his son Walker.  But clearly my professional colleagues had their hearts touched and their tears triggered for different reasons – perhaps they were thinking about one of their past patients, or an aunt or an uncle, or even about their own vulnerability. I’ll never know.

Ian’s talk, although centred on people with intellectual disabilities (finally, they had airtime on a stage) was also a talk about what makes us human. And that’s not success or competition (as many of my accomplished friends are engaged in), but instead he expressed what makes us human is simply love and belonging. People with intellectual disabilities understand that deeply. As Ian said, the disabled do the work of love.

I can’t adequately summarize his talk. It was a profound homage to people with intellectual disabilities – the likes of which I have never bore witness to before.

I heard Ian speak in 2009, also in Halifax, also at CAPHC, and knew him to be brutally honest and real – unafraid and apologetic – refreshingly with no reverence for the graduate degrees and fancy titles that filled the room. I knew Tuesday’s talk would be important, and delayed my flight home until the next morning to see him. I knew it would be an important talk and it was.

The whole pediatric health conference had been focused on fixing: deciding who was worthy of fixing and funding; research focused on helping families to fix their children; and a session mocking patients who were trying to fix themselves by turning to alternative medicine.

All this fixing talk made me unsettled by Tuesday afternoon, after crashing from my high from Sunday’s CFAN Symposium. In stark contrast, Ian told the health care audience to stop trying to fix his son, to “pay attention to the person he actually is”. He continued, “Let us put medical care behind human interaction. Let us build communities that are much less bureaucratic, much more inclusive…and that embrace and celebrate the beautiful grace of people like Walker.”

Ian Brown was a messenger for love and belonging – the two things that really matter in health care – the only way we are going to see our way through the big costly bloody mess that is our health care system. He was an eloquent poet, each phrase carefully chosen, spoken straight from his Dad heart, passionate and poignant. I furiously scratched snippets in my notebook. About his son: what value does Walker’s broken life have?

About building a community: for once the disabled would have a home with a great view…where all you have to do is keep company with one another.

In the end, Ian challenged us to join the intellectually disabled and be touched by the grace of who people actually are, not by who we think they should be.

Later that night, I FaceTimed Aaron: ‘Hi Mom!’ he said brightly, his round face and almond eyes lighting up the screen, ‘How was your day?’ I was struck by the gift that is my son, by the very fact that he was born, that he is with us, that he is human. There are so few people who understand him in this world. He shows us the path to love every single day, over and over again. If only we can adopt enough humility to push our own egos aside to clearly hear what he’s trying to say.

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reflections on CFAN

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When you let moms + dads out at night, they socialize with Kyle, the Lobster Man. 

The past ten years, if I’m fortunate enough to secure funding, I attend the CFAN (Canadian Family Advisory Network) Symposium.  This year it was in Halifax, so I embarked on a trip across Canada to meet up with my peeps from children’s hospitals in Canada.

One problem with going to conferences it that I feel all inspired when I’m there, and then the moment I step off the airplane back home, the inspiration has dissolved and I’m back to the grind again.

In an attempt to help with my remembering, here’s my mini-report about the CFAN Symposium, pecked out on my laptop on my hotel room bed.

CFAN is for those who are interested in patient and centred care in child health in Canada.  Typically, paid hospital staff bring a team of family volunteers who are on Advisory Councils in Canada.  Unfortunately, this means that the families who want to attend CFAN have to find a hospital to fund their trip.  They need to be able to take time off work, find childcare for their kids and be able to travel far from home.  On my wish list for future dates?  Youth and family scholarships that folks can apply for to offset the travel, accommodation and registration costs, or more hospital support to send more family and youth reps.  It is important for CFAN to expand its base, so it isn’t just the privileged few who literally sit around the table.

The CFAN workshop used to be purely family meetings, but we realized that this approach was not inclusive and led to us merely talking amongst ourselves.  This was great for information sharing and peer support, but not so great for informing clinicians and administrators about the family experience in health care.  Sharing with our professional colleagues could not happen behind closed doors, so we opened our doors.

This year, a diverse 70 folks registered:  families, youth, paid and unpaid family advisors, clinicians, physicians and administrators filled the room.  Although we welcomed all interested parties, CFAN’s agenda is firmly set by families.  After years of attending health care conferences that are strictly health care professional focused, CFAN is our time.

For those of us fortunate to travel to Halifax, it was an engaging day. One participant noted:  “The day was long, but didn’t seem like it – it zoomed by so fast.”  Thankfully, the organizers (including new co-chair Karen Sappleton, founder Frank Gavin and local host Catherine Gunn) offered a mix of lecture, entertainment, storytelling, history, small group conversation and an engaging Youth Panel to keep us learning and inspired.

Karen welcomed us with a meditation, which is a lovely way to settle into a long day.  We began with Holly Gillis presenting in Sydney’s Spot, an annual speaking spot set aside exclusively for the family story.  This special spot is named in the memory of the daughter of former CFAN Steering Committee member Ruth Hartanto.  (More about Sydney’s own story is here).  Opening the day with a family story is a powerful way to ground the audience.  So often health conferences fill their programs with talks about research and programs and celebrity speakers and they totally forget the common reason that brings them to the room – and that reason is the patient and family.  Sydney’s Spot is there to remind us what health care is really about.

Local family speaker Holly Gillis spoke in Sydney’s Spot this year.  I was impressed by her clear messaging and passion.  As an added bonus, her twin daughters accompanied her – two important reminders about what really matters.

Holly shared not just her passion, but her wisdom.  Her key take-away was that her family’s experience in the health care system was consistently inconsistent. She gave many practical examples about exemplary care, which came from the insights from her six year old daughters.  It felt good to her girls when people:

  • talked to them directly, instead of to their mom
  • smiled at them in the hospital
  • helped them in the hall when they were lost

The girls had the important recognition to know that they knew when people who worked in the hospital were having a bad day, and that didn’t feel good to them at all.  Holly also shared that ‘finding my voice was a struggle’ because of the power dynamics with professionals. Holly did a great job of emphasizing that the small things do matter.

Then Frank Gavin, CFAN’s Founder and National Liaison, gave an interesting presentation about the 15 year history of CFAN,  ending with a call to members to consider the question: what should CFAN’s purpose be?

Social media is hot right now.  Dr. Christine Chambers gave an energetic, creative talk about engaging with families to further the message of the It Doesn’t Have to Hurt campaign.  Christine is a super engaging speaker – expertly weaving both humour and data into her talk.  I’ve never seen a research talk like it before – brava to her.  What I found most interesting were her reflections about breaking down the barriers between the world of research and the real world.  She’s harnessed the power of social media to do that.  Christine’s passion stems from her experience as a mom – when her children had hospital experiences, she was shocked that her research about best practice for managing pain in children had not been transferred into the hospital setting.

Christine had so many great quotes (and stunning visuals on her slides, too).  I’ll let them speak for themselves:

  • the issue isn’t do parents go online or not to get health information – that ship has sailed
  • there was lots of eye rolling from scientists when I first talked about using social media
  • there’s a 17 year gap between child research and when it is used in real life

Wanting to spread the good word about managing pain in children led Dr. Chambers to connect with ‘real life’ moms who are taking their kids for immunizations and lab work.  She reached out through Twitter to family leaders and parenting organizations to spread the word about strategies to minimize pain.  Voila – her mom connections shared this super cute video all over the world via Facebook and Twitter – saving many kids from the very real pain of needles.

The CFAN group loved Christine’s talk and eagerly shared their own ideas about how health care professionals could communicate with families after the lunch break.

The day ended on a high note, with a Youth Panel with three young ladies who had health care experience at IWK and SickKids.  We were so fortunate to have these articulate young women dedicate their time to share their wisdom with a room full of moms and dads and clinicians.  Jennifer Berube, the moderator with IWK, began the panel with this:

A wise person knows there is something to be learned from others and:  Stop.  Listen.  Wonder.

It was such a privilege to bear witness to the stories of the young ladies on the Youth Panel.  I learned so much from them:  that they liked to get together at social events with other youth; that they didn’t connect because of a similar diagnosis – what was important was that they had common experiences in the hospital; that youth engagement works when you go OUT to the youth to let them know about the Youth Council (and not just put a poster on the wall).  All three panelists expressed that serving on councils helped them to come to terms with their illnesses, especially when they could see they had a hand in making things better at the hospital for other patients.

One eloquent young lady concluded: Some of my best memories at the hospital were when I felt most vulnerable and a staff member cared for me.

That sentiment of caring, my friends, is also the heart of CFAN.  This is a community that cares for each other in an open and non-judgmental way, and I feel fortunate that we spent time together for a few days in lovely Halifax.  This will likely be my last CFAN workshop for some time, for I, too, need hospital funding, and am leaving my hospital position in early November to go back to freelancing again.  Take good care…

make the space for the listening

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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.

sacrificing empathy for efficiency

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(This gorgeous canvas was gifted to my gentle daughter, who is going into nursing school this fall).

Six years ago, near the beginning of my career in the world of patient and family centred care, I was at a Family Centred Care Conference hosted by a pediatric hospital.  I was in a session that was facilitated by the wonderful Peter Rosenbaum.  He broke us into small groups, and asked the question:  Family Centred care is….  Each group had to fill in the blank.

One nurse stood up and said, rather angrily, I don’t have time for family centred care.  I was sitting at a group of family representatives.  We all audibly gasped.  No time to introduce yourself?  No time to smile?  No time to make eye contact?  Family centred care is all those small gestures that mean a lot to patients and families.  It is these small demonstrations by health professionals that show us that you care.

However.

One element of family centred care that does takes time is listening.  Making space for people.  Listening with your whole self.  Minimizing distractions. Not rushing or appearing rushed.  And yes, sometimes you can effectively listen to what patients need in thirty seconds.  But many times listening means slowing down, pulling up a chair and sitting down for a while.

Alas, our health system does not compensate for this types of kindness or compassion.  Our Canadian system is either based on fee-for-service (see as many patients as possible) or it is driven by the need for efficiencies.  I’ve always been wary of philosophies in health care that are modelled after processes in car factories.  For human beings are not cars.  An interaction with another human being includes taking the time to get to know each other.  This is the only way to create a relationship that is built on mutual trust.

Dhruv Khullar wrote a poignant essay in the New York Times earlier this month called The Importance of Sitting with Patients.  In it, he laments a system that is so focused on the ‘altar of efficiency’ that it forgets the importance of sitting with patients.  Should hospitals really be run like businesses?  Does the race for efficiency sacrifice empathy?  I concur with Dr. Khullar and say yes, in its current form, it does.

But here’s what I think.  Visionary health leaders can add measures for compassion in performance reviews,  hire based on both heart and brains, share patient stories at committee meetings (or even better, invite patient reps to committee meetings), and celebrate acts of kindness in their hospitals.  If they can somehow figure out a way to compensate for listening, well then empathy can indeed function alongside efficiencies.

I read an unattributed quote on Twitter, and I think it is brilliant:  health care should be less about the care, and more about caring for people.  Less about services, more about serving people.  And caring and serving does take time.  Having worked in health settings for the past six years, I now feel for that nurse who stood up at that conference and said she didn’t have enough time to practice family centred care.  Because the health system has slowly but surely stamped out her passion for caring for people.

As Dr. Khullar says, there is tremendous value in having more time to spend with patients.  Let’s continue to build our own altar of empathy.  Six years later, I believe now, more than ever, that love always wins.  I know that it is the gentle people, like my own daughter Ella, who are going to change the world.