on leadership

integrity

I walk a lot.  After I was diagnosed with breast cancer I promised my daughter – who was then a second year nursing student – that I would walk a minimum amount every day.  I have not missed a day of walking for two years, even if I had to drag myself out of our condo for a half hour walk in the pouring rain.

On my walks sometimes I just listen for birds.  Other times I take meetings, talk to friends or tune into podcasts.

My current favourite podcast is the Good Life Project.  I feel as if lately this podcast is working hard to be more diverse by throwing its net beyond the typical self-help voices.  I anticipate my walk every Monday when a new episode is released.  Last week, host Jonathan Fields talked to Judge Victoria Pratt.

Judge Victoria Pratt is a judge in municipal court in Newark, New Jersey.  She believes in using dignity and respect to restore humanity to the justice system – for both those people who are victims and those labelled as ‘criminals’.

I always try to apply learnings from what I hear to my own world.  Beyond a messy divorce, I thankfully haven’t had much experience in the justice system.  But I have been a patient in the health care system, had three kids in school, and have a child with a disability who uses services in the human services sector.  What I realized listening to Judge Pratt was this:

Dignity and respect can restore humanity in all systems. This philosophy can be applied to health care, education and human services too.  

Her interview had so much wisdom about leadership of any kind.  I cannot recommend it enough.

Here’s what I took away, assembled in quotes from the good judge herself.

1.  Are you serving yourself?  Or are you serving others?

Be clear about who you are serving.

2.  People need to understand what you are saying.

Speak plain English.

3.  Listen, listen, listen and learn from your listening.  Judge Pratt talks about asking people who have been arrested to write an essay about themselves.  Then she asks them to read their essays out loud in her courtroom, both to give them a voice and so she can better understand them through their stories and life experiences.

Give people voice.  Help me see you.

4. Don’t make assumptions.  Subscribe to an outreach model to go beyond your walls to foster understanding of different life experiences.  Go to people’s homes.  Meet them for coffee.  Judge Pratt shares an awesome story about going outside the courthouse to stand in line at the food truck…and how this simple act gave her a greater understanding of the people she serves.

Things are always bigger than we think.

5.  Do the work to partner with those with lives different than your own.  Don’t surround yourself with yes men (and women).

When we have differing and colliding points of views, we always arrive at the best decisions.

6.  Stop making assumptions.  Again with the outreach – if you say you do engagement, then you must do outreach.  Go to the people to meet them where they are at – not where you are at.

(People’s truth) doesn’t reveal itself in the office.

7.  Every single day, tap into your original calling.  Do not forget your original calling.  Do not let the system take this away from you.  Your calling is yours and yours alone.

It is important to show up for what you are called to do.

These are crucial concepts for leaders everywhere.  If you subscribe to the notion (like I do) that we are all leaders in our own lives, then Judge Pratt’s wisdom applies not just to those with a title and power, but to all of us too.

If she can treat people in her courtroom with dignity and respect, why can’t the rules of dignity and respect be applied to patients in hospitals, or students in schools or clients in the human services sector?  The answer is a mashup of Judge Pratt’s approach and the Brene Brown quote above:  it has to do with courage and integrity.

If you say you believe in patient-centred care, or student-led education or client-centred practice, then you must demonstrate that by treating the people you serve with dignity and respect.  This is integrity.  And this takes courage.  It is a simple and as complicated as that.

ps:  If you don’t have an hour to listen to the podcast, check out Judge Pratt’s TED Talk.

retweeting is not enough

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Last month I made a racket about leaving the patient engagement world.  I resigned from all my current positions as a patient representative on committees and groups.  My rather rhetorical question was: To what end have I put hundreds of (mostly unpaid) hours of work working with organizations to change a health system that does not want to be changed?  I have been sold a lie.  Nobody can show me any evidence that patient engagement efforts lead to meaningful system change.

Many people, including senior leaders of health organizations, retweeted my blog post saying things like: A must read!  This was momentarily flattering, until I recognized once again that talk is cheap without action. Of the organizations I departed from?  Three simply ignored me after I resigned.  One said, ‘I’m sorry you are burned out.’  And one leader sent one of her staff members to meet me for coffee.  I found the last response most promising.

And I hereby introduce the notion of The Exit Interview into the patient engagement world.

If you are collecting feedback about how you are doing patient engagement, I would respectfully suggest not only speaking to those currently involved with your organization.  Please consider scheduling a conversation with those who have left.  There are great lessons for those leaders who are unafraid of constructive feedback and who are open to being curious.

An Exit Interview says this:

  • I am not making assumptions about why you left.  Common assumptions associated with patients are: you burned yourself out, you are too busy, you are sick.  (Note these reasons deflect the responsibility for the leaving solely onto the patient).
  • I am open to the notion that if this is relationship-based work, I might have a role in your departure.
  • I am curious how our organization (and indeed me) could have done a better job engaging you.
  • I will apply the learnings from the Exit Interview to improve and grow.
  • I will do my best not to take your constructive feedback personally.
  • I acknowledge the courage it takes to speak up to give this type of feedback.

Alas, the lone organization who scheduled the Exit Interview with me cancelled our meeting.  We picked another date but then the staff member cancelled again.  This time she didn’t reschedule.  I get it.  I won’t let the door hit me on the way out.

Less Retweeting.  More Action.  An Exit Interview is a great start, a practical idea that could be implemented right away in Patient Engagement programs.  Unless you are only looking for cheerleaders, which means that engagement is an exercise in tokenism to you.

I only get one swan song and this is it.  My own take-away lesson is this:  perhaps sharing our time and stories isn’t about changing the health system after all.  Maybe it is instead about making connections with one person at a time.  Maybe one single person chatted with me in the hall or read my writing or heard me speak and tilted their head and paused to think, ‘gosh I never thought about things that way.’  If us patients and caregivers advance the understanding that there are different perspectives, diverse points of view, other ways to look at things – well then maybe that’s not a failure after all.

i’m a difficult mom

difficult

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.

 

the damn silos

silos

There is a lot of talk about The Silos in our world of kids with disabilities.  The first few weeks after we moved to British Columbia, we were in a rosy state of honeymoon.  We had found Aaron a school that accepted and believed in him, and all was well.

Then reality started creeping in.  In Alberta, I had childcare, respite, a pediatrician, a pediatric dentist, an audiologist, a psychologist, an optometrist, a behaviour coach, Special Olympics, other adapted recreation programs and a social communications program all set up for our boy.

In this new province, I am starting from scratch.  It feels like when Aaron was first diagnosed, but this time (thankfully), I’m not in the midst of thick grief and juggling a newborn baby and his young siblings while I’m filling out forms and running around to appointments.  I’m 12 years wiser, but still incredibly frustrated because I know the people in the systems can do better.    

Here’s what I have written in my ‘to do’ scribbler:

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Eight weeks into living here, and this is a MESS.  I can’t secure funding for after-school care for Aaron, and the daycare won’t even consider him without funding.  For some reason, the school wants another audiology test, even though he had one in January.  The psychologist wants to give him an IQ test so he can get funding for high school (um, NO). Our awesome nurse coordinator back in Alberta requested a referral to a pediatrician here, but I haven’t heard anything back.  We have to go to yet another ministry to apply for respite funding, but I haven’t heard back yet either.  Back in Alberta, the ‘Family Support for Disabilities’ (I put that in quote because they don’t actually support families) people with the Ministry of Human Services rejected our application for funding for Aaron’s dental surgery that happened in February because we did not get all their (stupid) forms filled out and signed before surgery  (plus they sent me the wrong form to begin with and I got it all signed and then had to start all over again when they sent it back, rejected) because he had surgery very quickly because we took a cancellation spot.  We are waiting to hear if he’s been accepted for a week long overnight Down syndrome summer camp (thankfully my lovely Alberta pediatrician filled out the medical form for us because we do not have a pediatrician here yet – see above) but the Nursing Director has to ‘approve’ him.  To travel on the ferry at the ‘disabled’ discount, we have to fill out a form proving his disability and we do not have a doctor to fill out the form (see above).  I am waiting to hear if an awesome-sounding summer day camp will accept him, because he’s 12, not 13.  People don’t return my calls or emails, show up for our pre-scheduled phone meetings, and I spent hours each week just following up on something I’ve already initiated.

This is what The Silos look like in real life.  And this is for a kid who only has Down syndrome – he does not, thankfully, have any active medical concerns right now.  (Although he did get bit by a tick last week, but seems fine thank goodness because he does not even have a doctor to go to).

This whole mess is infuriating and frustrating.  They send me forms and I dutifully fill them out and mail them back and then they send me a letter telling me to refill out forms that I’ve already filled out.  I am so sick of filling out forms and photocopying paper and walking to the mailbox because nothing is electronic and spending my days off in ‘intake’ meetings repeating the same information over and over about my child and convincing them that he’s either:  not very disabled or super disabled so that we can access their programs.

And I actually WORK in a children’s hospital and have some understanding about how to ‘navigate’ this damn system. We can even pay out of pocket if we have to. (And what of the families who do not have my advantages?  I fear they are just lost forever, laying at the bottom of some Damn Silo).

But when I consider all I’ve written above, I just want to crawl back into bed.

WHAT IS THE SOLUTION TO THE SILOS?

Yes, please, leaders in health, education and child and family development, please keep on meeting and chipping away at these Damn Silos.  This gives me a glimmer of hope for the future, but I’m sad to report that change is not going to happen in Aaron’s generation.  I really hope it does for families behind us in our journey.  These Damn Silos took decades to carefully construct, and they aren’t going to be dismantled anytime soon.

Here are three simple things that I firmly believe we need:

  1. Connection with other families.  If you are working with a new family who has a new diagnosis, or who are new to an area, please find a way to connect us up with other families in our world.
  2. Family leadership and advocacy skills.  Teach us how to effectively make our way around these Damn Silos.
  3. One person who will actually help us. Nobody helps us.  Or, they will help in their little piece of The Silo and then they are done with us.  Or they say they will help us, but then they don’t return emails or phone calls – so that’s not really any help at all, is it?

Note:  these must be done in conjunction – just hiring a ‘navigator’ isn’t going to help if we cannot do things ourselves or be connected with our peers for support.

In future blog posts, I will provide more reflective insight into these three solutions.  I am currently neck deep in the Ranting Stage of Frustration.  I will pop back up once I’m able to be more constructive.  Right now, I’m going to put my head down on my desk and have a little sleep.