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.

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.

once i ate a doughnut

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the doughnut in question

It was your shitty lifestyle that gave you cancer, and if you don’t change your shitty lifestyle, your cancer will recur.

This was the key message to a two-day workshop for cancer patients that I attended last week. Half way through day two, I stood up and walked out. If my time here on Earth is limited, I don’t need to spend my days being lectured to about this kind of sanctimonious crap.

Instead, I went for a long walk, met my husband for a lunch (I had a salad, just for the record, since I’m feeling defensive now), went for another long walk along the beautiful Vancouver seawall and met up with a dear friend for tea. This seemed like a healthier way to spend my time.

I signed up for the workshop for my Summer of Healing after my breast cancer diagnosis and treatment this year.  I thought: I’ll show up and be open to learning. I lasted a day and a half before the blaming, finger pointing and judgmental tone of the lectures from the ‘experts’ did me in.

The room was filled with people with cancer who had lived healthy lifestyles. I’d call this the classic west coast way of life – in this case, there were many fit, nutrition-conscious women who happened to have breast cancer. (And they were pretty pissed off about it, too). There were also three young people whose cancer had recurred.

The presenters did not understand their audience. I’m not sure how blaming people with cancer for getting cancer in the first place is helpful. Patients do not need more fodder to add to our own feelings of guilt.   We are also not stupid.  We know that being active and eating healthy is important.  No kidding.

Even if I smoked, drank, was obese, ate too many doughnuts, warmed up my food in plastic containers in the microwave, does this mean that I deserved to get cancer or that I am less deserving of care or compassion for my cancer?

The ‘it is your own fault you got sick’ mentality is what is feeding the repeal of Obamacare in the US with the BCRA Act. I follow this awful Act carefully on Twitter and feel deeply outraged for my American friends. We’d be so hooped if we lived just a few kilometers to the south in the US – my husband and I are both self-employed, we have a kid with a disability and now I have cancer.  We’d also be bankrupt if we didn’t have proper insurance coverage.

This patient-blaming attitude is pervasive everywhere, including in Canada. (Although I’m extremely grateful for our Medicare, which is our quasi-universal health care coverage for hospital and physician office care. This means I don’t have to pay for my medical care because I got sick).

“Maybe you will live a healthier lifestyle afterwards,” a friend said to me on the phone, not so helpfully, when I was first diagnosed. I was lying on the couch recovering from surgery. This implied blame is thankfully mostly unspoken, but was the overt attitude at this ‘cancer care’ workshop.

The truth: cancer is a combination of genetics, bad luck, rogue cells – and yes, environment and lifestyle are factors too. But there is no one cause of all cancers – cancer is much more insidious than that. Our own cells turn feral on us for all sorts of reasons. If researchers knew what that reason really was, we would already have a cure for cancer. You can’t prevent cancer by doing any one thing.  (Read about a recent study from John Hopkins about the topic of risk factors here).

The real reason I think people are blamed for getting cancer is because we are all terrified of becoming vulnerable, needing help and dying. We think that we can do all sorts of things to avoid death.  Alas, there is a randomness to living that is out of our control. There was a 1 in 700 chance I’d have a kid with Down syndrome, but I had him anyhow. (Many feel my son’s birth could have been prevented, but that’s for another blog post). The current stat is that 1 in 9 women in Canada get breast cancer. I happen to be one of those women.

I know I have lived through many women’s biggest fear. Once you start with the boob-squishing mammograms, the idea that you might have breast cancer begins floating around in your mind. I thought I was immune from breast cancer because I breastfed all my children. That was an arrogant, naïve and mistaken notion.

I’m not suggesting you don’t live a healthy life, whatever that means to you. That would just be silly. But…stop the patient blaming when people do get sick. None of us are going to escape this world without acquiring some sort of illness and eventually dying. This is part of life.

My healthy lifestyle changes since getting cancer include: holding those who showed up for me close, more hugging, going to therapy to finally figure out how to love myself, meandering on long walks, marvelling at sunsets and remembering to breathe.  I still eat cheese, lie around in my bed watching Netflix and enjoy a tall glass of cider. Everything in moderation, folks. My best advice is to go forth and live your life under the guise of joy and not fear.

Cancer workshop organizers, shaming patients is not going to lead to behaviour change. (See this great post by Carolyn Thomas about ‘non-compliant’ patients).  Being perfect does not prevent cancer.  Try treating those who are suffering with respect and compassion. Suspend your pious judgment and meet people where they are at.  People who have cancer need your help (not your disdain) to learn how to heal, inside and out.

the grace period

good-vibesI woke up at 4:45 am. The cat heard me rustling and started meowing outside our bedroom door. I have to figure out a way to stay calm. I have the doctor’s appointment at 10 and then nothing so maybe I will go to the dog beach. I’m trying write this on my blog and just post it but I don’t know what to say.

I guess I’ll start here.

I write about disability, motherhood, inclusion and patient & family centred care. Most of my work is drawn from my experiences being the mom to Aaron, who is 13 years old and has Down syndrome.

Now it is my turn. Here’s where family centred care turns into patient centred care. On Monday, I was diagnosed with Invasive Ductal Carcinoma (IDC). I didn’t know what that meant either. It is breast cancer (carcinoma) that started in my milk ducts (ductal) but has spread elsewhere (invasive).

The past three months have been a a diagnostic gong show of delays and fuck ups (thanks British Columbia health system).  I termed this my grace period – the time before everything changes.  But I’ve since realized that all of life between when we are born and when we die is actually a grace period too.

I was numb with shock after the call from my doctor with my pathology results. I’d like go back to feeling comfortably numb, but the shock is slowly starting to peel away like a crusty bandaid, exposing something horrible underneath.

Telling people has been hard. This is especially true for my children – my two adult kids – my beautiful, gentle girl and my tough musician son -and my one teenager with an intellectual disability. I never know how much he understands but it is always more than I can ever know.

I had an important conversation with a friend who generously picked up the phone immediately after he received my email. He shared his wisdom from his family’s own recent experience.

  1. Only surround yourself with people who support you.
  2. Tell everybody who will listen. People want to be involved in some way. Don’t travel this journey alone.
  3. Approach this with positivity. You can choose to be miserable or you can choose to be positive. Choose positivity. You have to endure.

This blog is my version of telling everybody who will listen. Forgive me if I don’t call you back or respond to emails. I’ve read your words and I’ve heard your voice, and for that I am grateful. I’m sorry if I didn’t tell you myself – the telling is hard. I’m not happy to have a new well of writing material to draw upon. No, I didn’t need more street cred in the area of patient and family centred care. But I am a writer and I share stories that are important to me, and writing does helps me make sense of random events. I know that telling my story will help me heal.

Since November, I have seen many health professionals. I choose to only remember the kindnesses. Like the mammography tech at BC Women’s who stroked my arm when I was administered the sharp freezing for my biopsy. (News flash: needles in your boob when you are imprisoned in a mammogram machine really hurt). She also brushed my hair away from my face when it fell into my eyes, causing instant tears to well up in my eyes and slowly drip onto the hospital blue pillow.

My sweet family doctor is a treasure. She called me late one afternoon when I was driving back from my appointment with my terse surgical oncologist. She said: “I just called to see how you are doing.”  She’s the only clinician so far who has taken the time to ask how I was feeling.  I am so thankful for her.

I have surgery booked in a week and then a year’s worth of chemotherapy and radiation treatment. This is the long haul and I’m scared. I’m wearing fear like a heavy cloak – it permeates everywhere.  Most of all, I hate that I’ve hurt the people I love.

Here’s to more simple acts of kindnesses. Here’s to those who took the time to pick up the phone.  Here’s to being open to new people appearing in my life. Here’s to forgiving the people who have already said stupid things. (I’m really busy, but I’ll try to rearrange my schedule if you really need help. Um, thanks?). Here’s to finding humour in the dark.  Here’s to character building (I guess I haven’t had enough). Here’s to comfort for my husband and my children. Here’s to resiliency.

And here’s to grace, too.  I don’t have it right now, but I hope to discover it along the way.

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.