i’m a difficult mom

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Me as a mom in the hospital

I once got up in front of an audience of clinicians and announced: I am a difficult mom. I added, if your child was hospitalized, you’d be a difficult mom too.

I was on a mission to change the way family ‘complaints’ were viewed at this children’s hospital. When I resigned from my position last year, this work was left half-undone. I hope it has continued.

My assertion was this: what if family complaints were seen as constructive feedback? What if we, as staff, sought out this feedback and saw complaints as wisdom? And then we applied wisdom from families that grew from difficult situations to improving the quality of care at the hospital?  This was a common-sense, but revolutionary notion.

I drew a fancy process chart with a narrative to encourage a standardized way for staff and managers to respond to constructive feedback. I suggested that all staff – including those in clerical positions – especially those in clerical positions – be offered ‘conflict management training’ to prevent issues from escalating. This type of training teaches things like, ‘saying yes instead of no,’ – and customer service concepts. While the term ‘customer’ makes many folks shudder, think about if those who work in health care are committed to care and service. Drop the word ‘customer’ and then you can simply think about serving patients and families instead.

But first, I had to share my story in the auditorium packed with hospital staff about how I’d been a difficult mom. As with most of my talks, my intention was for the staff to see themselves reflected in my words. I asked them to think how they would respond if they had a concern when their loved one was in the hospital. I can’t imagine that most health professionals would be meek and compliant family members.

I explained how it felt to be a mom in the hospital: You may well be catching families when they are at a low point in their grief. I once had a wise physician tell me she teaches medical students that anger is often masking fear.   Often anger is misdirected. Families may be seeking a diagnosis, reeling from a catastrophic accident and worn down by the system.

I talked about the reasons why families can be challenging partners:

  • Loss of control
  • Fear
  • Pain
  • Grieving
  • Information overload
  • Feeling hopeless
  • Cultural differences with staff, leading to staff assumptions and miscommunication
  • Fear of negatively affecting their child’s care if they speak up

There are certain practical things can make this worse. Lack of sleep. No coffee. Being hungry. Worry about other kids at home. Worry about money and work. Compound that with stress about their beloved child-patient and you create a difficult situation, not a difficult family, says this article called Difficult Families?

I gently suggested: please pause and always consider how families are feeling. You might not be able to put yourself in their shoes, but move towards a kinder understanding of their perspective. One lesson I learned from my divorce was ‘don’t poke the bear.’ Why make angry people angrier? There is no healing in that.

I had been introduced to many families at the hospital in the midst of their ‘complaint’ process. I didn’t want to be the complaint lady – instead, I wanted to teach staff how to prevent complaints themselves and that’s by being patient and family centred.   I wanted to suggest how to respond to negative feedback when it inevitably occurs. (I think we can all agree that hospitals are not perfect places). This is my ‘teach a person to fish’ philosophy. Immediately shuffling families off to some complaint lady only minimizes their concerns, absolves staff of any responsibility and teaches folks nothing.

The staff just didn’t know what to do with these families. They felt defensive and took negative feedback personally. This is human nature. Some wrote families off as ‘difficult’ or ‘hysterical,’ which is an easy way to stereotype and dehumanize people so you don’t have to think of them as people anymore. It is good to pause to notice if we are categorizing people and why.

I shared some of my personal approach to partnering with families who had constructive feedback. (And if we think of it, wouldn’t all families and patients have constructive feedback after an experience, if we only we were brave enough to ask them? Why do we wait until they bubble up as ‘complaints’?).

Sue’s Philosophy For Staff Working Families Who Have ‘Complaints’

  1. Check in with how you are feeling. Don’t judge your feelings but be aware of them. Take some deep breaths. Go for a walk before you pick up the phone or meet with families if you can.
  2. Don’t delay responding to the family. Delays make things fester.
  3. Avoid escalations over email.  Be respectful and suggest meeting in person if possible. (See #7).
  4. Consider framing complaints as constructive feedback and being open to learning in order be better – both personally and professionally.  We can all improve.
  5. Consider how constructive feedback can feed into quality improvement activities to improve the experience for future families.
  6. In this purely unscientific approach, I found that the root of 90% of ‘complaints’ was that people didn’t feel listened to, so….
  7. Start by setting a warm tone for authentic listening. Consider meeting outside the hospital, going to the families in their own communities – at their homes or a local coffee shop. Give families choice in when and were they would like to meet.  Don’t drag them into the hospital again.
  8. Suspend the notion of being a fixer and show up as a healer instead.
  9. It is okay to say I’m sorry.
  10. It is okay to say I don’t know.
  11. Ask the family what they’d like to see as a solution.
  12. Follow up and do the things you promised to do.
  13. Consider asking the family if they’d like to share their wisdom with others in some way. In my experience, in time, families with ‘complaints’ have the most valuable lessons to teach to Grand Rounds, medical students, committees and councils (if they so want). Many families have a strong need to improve situations in the system so they don’t happen to other families too.
  14. Take care of yourself after challenging situations at work.  Engage in reflective practice techniques, thinking about how things went and how you would make them better next time.  Do not forget to be kind to yourself too.

There’s no research behind my philosophy. There’s just 24 years of being a mom and thinking about how I wished I was treated when I was speaking up for my children (and more recently, advocating for myself as a patient). I’ve been ignored, minimized, blacklisted and dismissed over the years. While this feels crappy because I like to be liked, I still don’t regret speaking up.

As Audre Lorde says: When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it is better to speak.

It is up to those working in systems to honour all voices, not just the positive ones. You can’t be heroes all of the time. But every single person who works in health care can be a healer.  Please, help us heal.  Don’t turn away from our suffering.  You might just learn something from what we have to say.

For more on constructive approaches, read Yona Lunsky’s How to move from competing to complementary perspectives and Donna Thomson’s How We Go From Competent Caregiver to Family From Hell.

 

shed your parkas + titles at the door

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The Stollery Family Centred Care Council had its first meeting in October eight years ago. Soon after the holidays were approaching, so we decided to have a Christmas party. Hosting a party with this newly formed group of people seemed like a natural thing to do.

It was wholly unofficial, but in cahoots with Heather, the Family Centred Care Manager, we went ahead and did it. In the early days, we embraced a just do it and apologize later philosophy. We were pioneers in a new land.

We had no budget and we couldn’t serve alcohol in a hospital setting (of course), so my husband and I decided to host at our house.

We sent out invitations to the entire Council – senior leadership, family reps, physicians, clinicians – stressing that this was a family party – partners and kids were welcomed. We made it potluck to cut down on expenses and I think I had a jar at the door for folks to donate to our booze fund. Heather and I wrote out personalized Christmas cards for everyone. I bought sequinned Santa hats from the dollar store for all the kids. I don’t know how much all this cost. There was no funding and it didn’t matter.

As is typical for a December evening in Edmonton, it had snowed and the roads were icy and awful. But our doorbell kept ringing and boots and parkas piled up in our entrance as more and more guests arrived.

Here’s what I remember: Serving cocktails on a silver platter at the front door. Children running wild through our house: kids jumping on beds, kids running up and down the stairs, kids pulling out all my son’s toys (Note: this was all awesome).

The Senior Operating Officer of the hospital was there – her newly-retired husband had cooked an amazing dish for potluck while she was at work and he had braved the roads to meet up with her at our place. Another senior director came with her two children and husband. Her kids were playing with the so-called ‘Stollery kids’ – our kids, the patients – who were a diverse lot, a collection of children with disabilities and medical conditions. Seeing them all zooming around our house – at varying speeds, with various mobility issues – was as it should be.

My husband standing in our kitchen, deep in conversation with a dad whose child had died at the hospital the year before. Me, checking on kids downstairs, standing in the doorway of the bathroom, talking to a PICU intensivist while his young daughters ran amuck around us. A neonatologist popped by on his way from his martial arts class, leaning against the wall in the hallway chatting with a mom. It was a houseful of people connecting with people as human beings.

My husband and I hosted this party like every other party we had ever had at our house. Our formula was a bounty of food, fancy cocktails, blaring music and an open door. For whatever reason, people showed up. I understand now how important the simply showing up is. The people who came to that party were providing evidence of their early commitment to the family centred care cause. For the staff, this was an unpaid, after-hours affair. For the families, this was the end of a long day. But they still showed up. I believe this evening was a tipping point. It was the beginning of culture change at the hospital.

There were Christmas parties like this for about three years. The amount of people involved in family centred care at the hospital expanded and outgrew a house party. The celebrations switched to summer barbecues at community halls instead, which was a natural progression of growth.

But those early holiday parties were special. They were intimate and inclusive affairs.   There was a complete shedding of roles those evenings. Titles were taken off along with the parkas and boots at the front door. There was a relaxing of tightly held positions with a cocktail or two. Meeting everybody’s partners and kids felt really important. By the end of that first dark December evening, we were no longer ‘professionals’ and ‘families.’ We were colleagues and blossoming friends.

If you are reading this and thinking that there’s no way a house party with your hospital staff and patients/families would ever happen, here’s my challenge to you.

If you really want to partner with the people you serve, you need to see them – and your staff – as people first. It is your job to remove all the barriers to create an environment where you would be able to host a party at your house. (YES AT YOUR HOUSE).

If this seems impossible, you have to take away the preconceived rigid notion of what it means to be a professional, ignore the policies and procedures forbidding socializing and fund the damn party out of your own pocket if you have to.

This is not a movement created around a boardroom table. Providing opportunities to lose your title and connect as human beings is the only way you actually seal this deal. Celebrating together – breaking bread, getting to know each other, toasting to the season – is a good way to start.

the secret sauce

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I often get asked how some health organizations are successful at meaningfully engaging patients while others treat patients as if they are expendable checkmarks on their to-do lists.

This weekend, I was reminded of the ingredients that make up the secret sauce for engagement.  I was invited to the Stollery Children’s Hospital for a reunion of the youth, families and staff who have been involved with their patient + family centred care movement.  I had worked there for four years as their Family Centred Care Consultant to help establish their Council and their Family Talks program.  (Of note, I moved to BC to do the same work and failed miserably here.  You can lead a horse to water, but you can’t make it drink).

This weekend, amongst my beloved former colleagues and friends, I had a great epiphany.  My lightbulb moment was this: I was struck by three value-based elements that are mandatory for any health organization or professional who aspires to put patients first.

1. Demonstrate integrity.

There must be an alignment of an organization’s professed values and their actual behaviour. If your mission statement says Patients First then the behaviour of your organization (through policies and processes) and the actions of your staff (this includes everyone – parking attendants to clinicians and Patient Engagement staff, especially Patient Engagement staff) must actually put patients first, every single time.

This means doing serious self-reflection on how you treat ALL patients and how you handle challenging feedback. You cannot roll your eyes at ‘difficult patients’ or ‘hysterical mothers’ or say that you are ‘babysitting families’. Or dismiss patient feedback or the stories you do not want to hear.

Also, the only people who can tell you if you are patient centred are the patients themselves. You cannot decide this for yourself so you can slap it all over your website like some sort of public relations exercise.

Integrity also means if you say you want to hear the patient’s voice, you have to make space for the uncomfortable stories and honour those who share them with you. Listen hard. Don’t turn away.  There is growth and learning in the discomfort.

2. Give up your power.

If you want to collaborate with patients in a meaningful way, you have to be willing to give up your power. While patients are exceedingly vulnerable in health care settings, we also aren’t stupid. At the bedside, you have to concede some of your control and do everything you can to minimize trauma and suffering. Plus, for God’s sakes, cease all practices that strip people of their dignity and stop treating patients like dumb rats.

If you want patients around your boardroom tables, then you have to actually make room for them at those tables and treat them as equals. That includes not pulling stunts like scheduling meetings last minute, having only one token patient and demanding that people volunteer their time.

When giving up your power, you also must admit that you can’t and don’t know everything. Believing you are the expert is the ultimate patient centred care killer. Put your ego aside.

3. Grant patients a voice 

Creating opportunities for patients to safely speak up and share their wisdom supports them to heal. It also helps them connect with one another to build their own communities and find belonging. Oppressing and dismissing stories or feedback harms patients. Ask yourself: do you want to heal or do you want to harm?

If you really want to put patients first, the first step is to sit down and be humble.

My heart was bursting at the reunion.  I felt like a proud grandma.  There are so many awesome families and staff who are now lighting the way.  Kudos to the Stollery for demonstrating leadership and integrity. Brava/bravo staff, youth and families: Heather, Christine, Karen, Michelle, Amanda, Sarah, Christie and so many others.  Put your head down and keep going. You are are the role models for this work in Canada, for both the pediatric and adult worlds.

Other centres? Pay close attention. They’ve set the bar high for you.

As Don Berwick says, take off your business suits and lab coats and join together with us patients and families.  In rigid health care systems, this demands an innovative mix of leadership, culture shift, behaviour change and alignment of stars.   If it isn’t uncomfortable, it isn’t disruptive and you aren’t growing.

Demonstrate integrity.  Give up your power.  Grant patients a voice.  That’s where the magic lives.

the longest goodbye

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Friday was my last day of work as Sunny Hill Children’s Health Centre’s Family Engagement Advisor.  I’ve been in the odd position of saying goodbye since the beginning of July when I first went on a leave of absence from my position.

I wouldn’t recommend giving four months’ notice for a job.  This has been like pulling a bandaid off veeeeerrrry slowly, as I didn’t want to leave.  I loved my job.  My quest for a flexible work environment has led me back to being home-based – within the confines of our condo, nobody cares what days of the week I work, just as long as I get the work done. So it is back to the freelancing life for me.

Resigning when you don’t want to is a weird thing.  I didn’t get fired nor did I resign because I was unhappy with my job and heading to another position.  Instead I left based on a tale of woe  – the end result was a sad Sue.

I hope I left well, as the leaving really is the hardest part.  All last week there were celebrations:  a managers’ breakfast, a roundtable where folks shared what they had learned working with me – interesting, a common theme was how the managers now approach family ‘complaints’ – reframing complaints as constructive feedback to improve the quality of care and service – that pleased me.

Later in the week, I was treated to lunch at my favourite restaurant and on my last day, I hosted cake and coffee in my office, was gifted a huge bouquet of autumn flowers, and very specially – received a beautiful painting from the nursing unit of children’s hands done by the young patients there.  I felt very loved.

A very diverse group of folks popped in and out of my office on Friday for a hug and piece of cake:  administrative support staff, booking clerks, therapists, managers and physicians.  My best hug was in the hall from one of the kindest, wittiest person I know – David, the gentleman who is the maintenance man at the hospital.  This variety of staff validated my approach at work, and in life.  Everybody matters.  Everybody influences the patient and family experience in a hospital.  Every single person working in a health setting should be considered a health professional – not just the clinicians – and deserves to be treated with the same respect and dignity that we ask for as patients and families.  That love needs to be spread everywhere, all the time, to change the culture in a hospital.

Thank you to my Sunny Hill friends for the beautiful send off.  Thank you to those in my online community who have expressed care and concern for me and our son over the past four months.  We will be fine.  Having me be home-based and more available for him has helped so far.  I’m resourceful – picking up writing, consulting and speaking gigs as I go along.  I’ll miss belonging to an organization, a steady paycheque (!) and the built in social connections that go along with that.  Being a freelancer offers lots of freedom, but it can offer up loneliness, too.  I learned so much about staff engagement at Sunny Hill, lessons that I will keep close to my heart as I move on.  As I like to say, patient and family engagement and storytelling is my life’s work, whether I do it inside a hospital or not.  I am proud of the family engagement work that’s been done at Sunny Hill over the last year and a half, and I know that the new Advisor will be in good hands.

Most importantly, it was an honour to have been invited to catch a glimpse into the complicated, beautiful lives of families who have children who are served by this pediatric rehab centre. May they continue to find the strength to use their voices and to share their stories to make the world of health care a better place, and may all the health professionals at Sunny Hill continue to create opportunities for the listening.

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.

from cruise ship to dinghy

Slide1There’s a familiar saying that floats around the our world about education services for our kids.  It speaks directly to moving from the preschool to the elementary school experience – we call it jumping from a cruise ship to dinghy, because almost all the therapy support from the schools dries up after kindergarten.

I was preparing to speak as a mom about transitions Saturday at a CHILD-BRIGHT workshop.  Now ‘transitions’ is a term the health professional world loves, and it is a more evolved term about being discharged from one service and moving into another.  (I especially detest the word ‘discharged’ and I’m glad they are moving away from it – as it reminds me of nasal discharge or discharge of the vaginal kind, or being spit out at the side of the New Jersey Turnpike, a la Being John Malkovich).

The word ‘transitions’ to me means change.  The professionals tend to put their own provider-centred lens on that, assuming this means moving from one of their programs to another.  To me, families should be the ones identifying what transitions are important to them.  For instance, for me, moving from the end of the school year to summer is a horrible transition, as I have to dig around trying to find childcare for my son so I can go to work. (This year I failed at that).  Another transition would be our move to a new home earlier this summer.  My boy’s adulthood is impending, so I’ve run around, panicked, trying to find my son a family doctor who will see him as he turns 19.  Each school year brings a new transition, with a new teacher and new Educational Assistants in Aaron’s life.  These are the transitions that matter to me.

I’ve never been accused of being subtle.  To take the cruise ship to dinghy metaphor a bit further, I created this cheeky image (above) which I showed to the workshop audience, a group of researchers and health professionals.

For me, this is what services for families and children with disabilities looks like throughout the years.  The last image is yes, someone drowning – and that is what looming adulthood feels like.  As I told the audience, the most important part of their work is to get a deep realization about what it feels like to be a family member afloat at sea. Change will only happen once they feel what we feel.  As pediatrician and IHI co-founder Don Berwick says in his 2014 book of his keynote presentations called Promising Change:

…”(change will happen)…when we realize that our white coats and our dark suits are disguises…our next big step is not to just serve people but to join them.

Services in the system – from cruise ship to drowning.  Pause for a moment to join me to feel what that might feel like to a family who has a child with a disability.  When that feeling finally touches your heart, then we can start to talk about change.