reflections on CFAN

lobster-man

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

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.

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.

my soft spot for pharmacists

I have a soft spot for pharmacists.  There, I said it.  They are one of only a handful of health professions who actively recognize the value of the patient voice.  They have not forgotten that patients are the people that they are working to serve.  Pharmacists organize conferences and invite patients to share their experiences.  That’s pretty profound, and I think they are true visionaries.  (Talking amongst yourselves all the time doesn’t make for a revolution in the health system, folks).

I just had the great honour of co-presenting with Allison Wells, who is a fabulous mom and pharmacist at the Canadian Society of Hospital Pharmacists in Banff.  Allison did an exemplary job of sharing the story of her son’s adverse drug reaction in a hospital setting.  She eloquently gave pointers to the pharmacist audience, and stressed that they had to use their own voices to  speak up to ‘stop the line’ when errors are made.  I was so impressed with her passion to share her son’s experience in order to make change in the health world.

Dr. Peter Zed before her gave some pretty terrifying statistics about patients presenting to hospital with adverse drug reactions, experiencing adverse drug reactions while in the hospital, and also after discharge.  It made me want to stay as far away from the hospital as possible.  But it was also heartening to know that pharmacists are looking at the issue of errors with great seriousness and transparency, and that they make a huge difference in making sure that the hospital makes people better, not sicker.

My take-away from Dr. Zed’s talk was this – he showed research from Hong Kong that said that patients adhere to treatment plans better if they receive follow up care from pharmacists.  And I might be stretching this a bit, but what I heard is this: patients will care for themselves if they themselves feel cared for.

And as far as my presentation, which followed Allison’s?  My talk was about this:

IMG_6486I know in my heart that pharmacists get this.  The standing ovation Allison and I received afterwards was proof.  (My first one ever, wow).

This was an awesome, engaged audience of health professionals, with big brains and even bigger hearts.  Bravo to my noble pharmacist friends – carry on doing the good work that you do.

pharmacists, heal people with love

This video from the Society of Hospital Pharmacists of Hong Kong comes by way of University of Alberta Pharmacy professor Lisa Guirguis.

My favourite line?

Cure illnesses with medicine.  Heal people with love.

Let’s consider the labels we have for different health professionals.  Think that pharmacists are introverted scientists, who merely count pills behind a counter?

Well, you are WRONG my friend.

Over the past year, I have been surprised by pharmacists.  Last summer, I interviewed six champion pharmacists to prepare for my Great Translators presentation at the Alberta Pharmacists’ Association.  I was inspired with their passion and dedication to caring for patients.  I then co-presented with RxA’s Director of Professional Practice Jeff Whissell to the Faculty of Pharmacy students last March.  This past weekend, Jeff and I co-presented again about patient centred care at the Canadian Society of Hospital Pharmacists‘ Educational Event.

Here’s what’s impressive about pharmacists.  Their scope of practice has recently changed to include more consultations with patients.  So they are very interested in patient centred care, and go as far as inviting real patients to speak to them at their conferences.  (The emphasis is intended; other health professionals invite researchers and administrators and themselves to talk about patient centred care and share patient stories – they aren’t quite evolved enough to invite real patients themselves.  This sort of infuriates me).  Pharmacists are further along this continuum of patient centred care.

The immersion in the world of pharmacists has taught me a lot.  I previously had no idea what pharmacists actually did.  Many years ago, I took a pharmacology course in university and barely passed.  I knew that pharmacists are very bright, academically inclined and have the ability to memorize a vast amount of complex information.  But that’s about it.

I’ve since learned that pharmacists are actually the great translators for patients in the health system.  They take something that is very foreign to patients (which comes in the form of a prescription or an order) and they help translate that into something that helps patients get better, they support patients to manage their own health.

Pharmacists have a vast amount of health knowledge, and are great resources for us.  In the community, pharmacists are incredibly accessible to patients.  In fact, you can see a community pharmacist by just walking into your local pharmacy.  You can visit them at 10 pm on a Sunday night, and you don’t need an appointment.  How I wish we could access all health professionals this way.

Pharmacists who work in hospitals often round with other health professionals to manage a patient’s medications.  But alas, we often don’t even know there’s a pharmacist in the crowd of white coats that present to us at the bedside.  They are virtually invisible – we don’t know who they are, or what they can do for us.  For instance, in critical care settings, pharmacists perform “pharmacokinetic monitoring, monitor vital signs and laboratory results, adjust medication dosages, enter orders, perform clinical checks and dispense medications.” (Canadian Journal of Hospital Pharmacists, July August 2014).  I mean, WHO KNEW THIS?  Not me.

This is about to change.  The profession is dedicated to increasing patient understanding and visibility.  Research about patient centred care and pharmacists is pointing to some simple tips to help patients recall and appreciate pharmacists.

To increase understanding of the pharmacist role, pharmacists can engage in some simple patient centred care approaches by:
-introducing themselves
-describing their role
-taking the time to find out what’s most important to the patient
-giving examples of the types of questions that patients might ask them
-sharing contact information with patients so they can get in touch with them.

Health care is not just about doctors and nurses.  There are at least 28 other health professionals that are dedicated to caring for us…and pharmacists are, in fact, leaders in advancing patient centred care.  Go ahead, and ask your pharmacist what they can do for you.

 

 

 

i don’t want to tick your box

When organizations first dip their toe in the waters of engaging patients on an organizational level through a committee or advisory group or council, they need to carefully inspect their motives.

  • Do they really want to hear what patients have to say?
  • Do they truly give patients a chance to use their voice to contribute to hard decisions?
  • Do they take the time to do the important work to flatten the hierarchy so patients can be heard on a level playing field with health professionals and administrators?

Three years ago, I spoke about Meaningful Engagement or Tokenism in Melbourne. It was a presentation for the Consumers Transforming Healthcare Conference hosted by the Health Issues Centre.  I wrote an article based on my presentation for the Health Issues Journal here.

My time in Melbourne was extraordinary because I stayed with Dr. Catherine Crock her family.  Cath is an exceptional and beloved pediatrician, and a true champion of patient and family centred care.  She is also the passionate Executive Director of the Australian Institute for Patient and Family Centred Care.

Cath Crock & me, Brighton Beach.

Cath Crock & me, Brighton Beach.

I spoke in Melbourne about the check box mentality of engaging patients.  (In Australia, they call check boxes ‘tick boxes’).  Are you ticking a box that says, “yes, we have a council, but we haven’t bothered to ask the patients anything important.  Or if we do, we disregard what they say and charge ahead and make our own decisions.”

It is hard work to meaningfully engage patients.  Sometimes you may hear things you don’t want to hear.  Most of us patients who want to give back to the health system have constructive feedback to give – which is both positive and negative.  If you aren’t ready to hear it, maybe it isn’t the right time to start up a council.

If you are looking to merely tick your box…well, I respectfully submit that’s just a waste of our time.   We are caring for ourselves or our loved ones who are involved in the health system.  We don’t have the time to be your cheerleaders.

We are busy starting a revolution to change the landscape of health care.  And that’s really important work.  You are welcome to climb on board, or please just move out of our way.

 

who speaks for patients, anyhow?

Who speaks for patients?  Patients do.

I’m happy to see the surge of patient experience and patient centred care themed conferences around Canada.  This is a good start.

But theming a conference as patient centred is not enough.  This is only the first step in the evolution of inviting the patient voice to share experiences and provide feedback to health professionals.

Many of these conferences have health professionals, researchers or administrators speaking about patient centred care. Or they don their but everybody is a patient hat and talk on behalf of patients.

There is sad irony about having professionals speak on behalf of patients at a patient centred care conference. Patient centred care is about doing things with us, not to us or for us.

I understand why conference organizers bring in health professionals who have had experience as a patient to speak. These speakers are colleagues of the audience members, and are likely seen as less threatening than a layperson patient speaker.  But I think the idea of using a patient speaker who is not a health professional is a bold one.

If we move along the evolution, a layperson patient speaker is asked to present.  Finally we are starting to model patient centred care.  (Even better?  At Canadian conferences, patient speakers have local Canadian context).

The different kinds of speaking spots offer varying levels of involvement, too:  from speaking as a panel member, to a break-out session, to opening or closing a conference.

Normally, an opening plenary session is the most prestigious of all speaking spots.  But I think if you are truly going to model patient centred care, this spot is not occupied by a lone patient speaker.  Instead, the patient speaker co-presents with a health professional. They don’t present two separate presentations; they spend time preparing a collaborative presentation. They truly share the podium.

And if you add a patient representative on your conference organizing committee?   Voila: you have full-blown patient collaboration.  And then you are walking the walk, folks.

I have created this handy The Ten Levels of Health Conference Evolution table that health conference organizers can use as reference:

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