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.

 

shed your parkas + titles at the door

tray
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

Screen Shot 2017-10-15 at 6.42.58 PM

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.

a gathering of kindness

australia

Catherine Crock + me at Brighton Beach  Melbourne 2012

One summer day five years ago I boarded a plane to Australia.  The entire trip took 33 hours – with bad weather, delays, missed connections and four flights.  I finally arrived at the Melbourne airport, bleary-eyed and having lost a day off my life. Dr. Catherine Crock was standing there waiting for me to take me to her home.

Catherine Crock is a mom, pediatrician, founder of the Australian Institute for Patient and Family Centred Care, the HUSH Foundation and the Gathering of Kindness.  She is a force and a rabble rouser – a whirlwind of energy, ideas and action.

I sat on the long flight to Australia, wide awake, crammed in a middle seat in economy class and quaking with fear.  I had never been so far from home.  I was going to present about Meaningful Patient Engagement at a Consumers Reforming Health Conference, which was hosted by the Health Issues Centre in Melbourne.  It took every ounce of my bravery to get on that plane.

Here is a story about what kindness looks like in real life.  I was covering my own costs to Australia, as I was talking only in a break-out session and was not a plenary speaker.  When my abstract was accepted six months previously,  my husband and I decided to cough up the thousands of dollars in airfare because the chance to speak in Australia was the opportunity of a lifetime. (Note:  If you don’t pay patient speakers, it is only us privileged speakers who are able attend).

Cath knew I was funding myself.  She offered that I stay with her and her family at their house in Melbourne to help with my costs.  I politely said in my Canadian way:  oh no, that’s too much!  But Cath countered in her welcoming Australian way and insisted.  This made me a bit nervous too.  I’d never been billeted with anybody before.

In the end, staying with Cath and her big family was the best thing part of my whole Australia experience.  I spent loads of time with her, soaking up her Cath-ness and travelling back and forth with her by public transit to the conference.  I met her five children and experienced the love in her full lively house.  I slept in the guest room at the back of her home where there was a kangaroo living outside my patio door.  Her family welcomed me, fed me and cared for me like I was one of their own.

The night before my presentation, I rehearsed in front of Cath and her husband Rod in their living room.  I was taking another risk and using what I call the Dick Hardt style of presenting.  I had 133 slides for 15 minutes of speaking.  (Yes, I flew to Australia to speak for 15 minutes).  Cath and Rod generously helped me polish my speaking notes.

Despite my jitters, my talk was well-received.  I was a foreigner with a weird accent and a strange way of presenting and this helped me stand out.  (Afterwards, I wrote an article called Meaningful Engagement or Tokenism about my talk for Australia’s Health Issues Journal).

Cath and I have kept in touch ever since.  I was supposed to visit her in Australia with my own family this past March.  She had kindly offered up her cottage for us to stay at. But then I got the damn cancer, so we had to cancel our trip, which was scheduled two weeks after my surgery.  This was so disappointing.

I have vowed to bring my husband and son to Australia in the next two years.  I want to attend the next Gathering of Kindness, which is an annual event organized by Cath and her colleagues.  This year’s event is on October 30 and is for health care professionals, artists and innovators.  The 2016 Gathering of Kindness is described as this:

The GOK 2016 invited 100 participants – actors, healthcare clinicians, artists, musicians and innovators to imagine that kindness, trust and respect were the fundamental components of the healthcare system, and that bullying was unacceptable. Collectively they proposed a better way forward. 

I can’t be there this year because I’m still healing from the damn cancer.  But this blog post is a very long preamble to say that I was pleased to support this important initiative by contributing an essay about kindness for the Gathering of Kindness blog.  I called it All the Warm Blankets.  Please read it and also check out the Gathering of Kindness site.  If you are someone who works in health care this will remind you that all your kindness matters, every single time.

Dr. Catherine Crock’s generous heart and fingerprints are all over my essay.  She works hard to bring compassion into health care settings, through her own actions and by leading initiatives like HUSH Foundation (which introduces healing music into waiting and treatment rooms in hospital environments) and the Gathering of Kindness.

I’ll never forget how Cath welcomed and cared for poor, scared, jet-lagged me five years ago.  We need more Dr. Catherine Crocks in this messed up, beautiful world.  She’s one of the great healers who is handing out warm blankets to everyone, everywhere she goes.  xo.

a portrait of the patient experience

I strongly believe that patients should tell their own damn stories, in whatever way makes sense to them.  Do you want to support someone who is suffering as a loved one or health professional?  Listen to their story, no matter how difficult it may be for you.

While I’m a word person, I’m fascinated by those who use other forms of art to share stories.  The Portrait of the Patient Experience is a TEDMED talk about the intersection between health and art.  Ted Meyer is a visual artist from Los Angeles who has created visual art, first from his own scars and then from the scars of others.  He facilitates discussion between artists with chronic diseases as the Artist in Residence at the University of Southern California’s Keck School of Medicine.  He does what I call The Important Work.

Here’s a favourite quote from his talk:  People always say – art should be about something until art is about something and then they don’t really want to look at it.

On a personal note, I shared the podium with Ted two years ago at Collaborating Across Borders, an interprofessional conference for health academics.   While I spoke about this, Ted impressed with his humour and creativity.  I knew he’d go far and that he did.

He says about patients:  Pre and post scar narratives are held together by their scars to give their life a new meaning.

I strongly believe that we can inspire, motivate and educate by sharing our stories in whatever form that makes sense to us.  Importantly, telling our stories also helps us to heal.

Arthur Frank references Judith Zaruches in his formative book The Wounded Storyteller,  Stories have to repair the damage has done to the ill person’s sense of where she is in life, and where she may be going. Stories are a way of redrawing maps and finding new destinations.

There are many ways to tell your story: a private journal, the whispered word, poetry, visual art, music, dance – or any other artistic form.  Creativity is an expression of you.

For those supporting wounded storytellers, it might be difficult to look at these scars.  These scars remind us that we all have the capacity to be broken and vulnerable in some way.  It is a great gift to those of us who are suffering not to look away.

sontag

There are so many secrets in the land of being a sick person – secrets associated with being that sick person and secrets in the health care world we are immersed in.  Now I’m no Oprah and I know nothing for sure.  But I do have a strong sense that the telling of these secrets will help set us free.

 

the weather

This video is a poem by spoken word artist Shayne Koyczan, produced for the Canadian Cancer Society.  If you or anyone you love has been touched by cancer, dig out a big box of Kleenex right now.

Today I have my regular quarterly appointment with my medical oncologist at the cancer agency.  In a windowless treatment room, she will examine me for signs that my cancer has metastasized.  I’m told they no longer use scans to find evidence of spreading disease.  Instead a human doctor will scan me herself, asking me pointed questions about headaches and back pain while I watch her carefully with my unblinking eyes.

Shayne says poignantly:  “We must steady ourself on the shoulders that science provides…a doctor becoming a weatherman, trying to forecast your end, trying to bend time into an answer and give it their best guess.”  

This is how art evokes emotion – to express the things we dare not – to help us to slowly heal.

Ps:  If you are interested in art and healthcare, check out Vancouver Island artist Carole Reid’s Instagram account, where she is documenting her experiences having breast cancer through her art, the HUSH Foundation, an Australian organization dedicated to creating calming music for stressful hospital environments and visual artist Ted Meyers’ Scarred for Life project.