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.

 

a grateful day

I’m back writing my book, but some days I feel as if I’m running out of words.  I’m going to share other people’s words for a while instead.

One of the best things I’ve done this year is to attend Wendy Quan’s Calm Monkey meditation classes.  On Monday’s class, she led us through a gratefulness meditation.  This beautiful video, called A Grateful Day, narrated by Brother David Steindl-Rast, reminded me of that meditation.

If you have five minutes, take a pause in your life to watch this video. This can help soothe your grief and your pain, even if for a few precious moments.

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.

The Affronts to My Human Body

Screen Shot 2017-08-26 at 9.33.05 PM
As I get older, I have become an accumulation of scars. A hernia repair when I was 8 years old left two faint, raised scars. Two attempts to remove an ovary resulted in a keloid in my belly button and other healed wounds from laparoscopic oophorectomies. (The term oophorectomy still makes me giggle). My partial mastectomy early this year left a one-inch scar that just peeks out of my bikini top. I have another scar and a lingering hematoma under my arm from lymph node removal.

I understand the medical need for these scars. They are evidence of removing things that were causing me trouble. But there have been other, unnecessary, affronts to my body.

In the process to be diagnosed with my bleeding disorder (von Willebrands, a common malady that is not hemophilia, but it is severe enough I wear a Medi-Alert bracelet because of it), a lab tech cut me three times with a razor-blade. She cut me. I couldn’t freakin’ believe it when it happened. I said: YOU ARE CUTTING ME WITH THAT? She said yes and then she cut me. They wanted to see how long it took me to clot without medication, with a bit of medication and with a lot of medication. (They administered the medication by stabbing me with a needle in my stomach, which was not pleasant, but at least it was temporary).

The three scars left from this bizarre diagnostic procedure are not temporary. They are on the underside of my forearms and they are permanent. It looks as if I might have had a cutting problem (I didn’t).   I am not pleased that nobody has thought of another way to test for von Willebrand’s without cutting people with razor blades on visible places on their body.  I think we can do better than that.

Along with scars, breast cancer gifted me with a blue nipple (that is thankfully fading) and two permanent radiation tattoos. When I was in for the appointment to prep for radiation, the Radiation Therapist took out this box thing with a needle and ink. And then she proceeded to poke me with it in two places – right in my cleavage and on the side of my ribcage. This was bizarre and these tattoos look like blackheads. I asked if she could at least make them into flowers but she didn’t think that was funny.  They put stickers on me, too, and drew on me each radiation treatment with a pen. That didn’t bother me so much, but it does disturb others. One woman on Twitter recently said the markings made her feel like a piece of meat. I can totally see that.

I asked a friend who is a Radiation Therapist – why the need for permanent marks for radiation that is over in four weeks? She told me that we get tattoos because other ‎marks or tape wash off and there isn’t a semi-permanent alternative.

This all seems weird to me and falls into the category of: what is a big deal for me isn’t a big deal for health care professionals.  What I don’t like is the permanent nature of something that the hospital only needs for a few weeks.  This seems to tread on my dignity.  It strikes me that there are many ‘side effects’ from procedures in the hospital that are shitty for patients, but convenient for clinicians so nobody does anything to change it.

My friend did add: there is quite a bit of research looking at alternatives like henna, UV lighting and “invisible” tattoos and external surface landmark light systems.  To this, I say: YES DO MORE RESEARCH. As a patient, this is important to me. I don’t want a stupid blackhead tattoo looking at me for the rest of my life. If patient like me were engaged to set priorities in cancer research, I’d ask to figure out a way to get rid of the damn permanent tattoos, pronto.

Little black dots might seem minor in the grand scheme of things, but I didn’t like losing even more control of my suffering body one little bit. I asked my nice oncologist if it was medically okay to get a tattoo on my breast to cover up their tattoo. He said very solemnly, ‘there are no counter-indications to getting a tattoo.’ He probably thought: this woman is clearly in the middle of a mid-life crisis and losing her marbles, but he was too polite to express any judgment.

So I travelled to Hawaii and got my very own tattoo to cover up the radiation tattoo on my breast. I went to a place in Maui called Hula Girl Tattoo. The young dudes working there have seen everything and they didn’t even blink at my request. I told them they were doing good work covering up a middle aged mom’s cancer tattoo.

Part of getting my tattoo was to say: Take that health care system! I am in charge of what permanent marks adorn my body!  I’m also going to send the cancer agency the bill for the tattoo and see what happens. It was $200 US. (KIDDING. I AM KIDDING).

More seriously, I have this pipe dream that one day patients will work together with health professionals to set research priorities to figure out how to minimize the many indignities that are inflicted on us in hospitals.  Then we will no longer have cuts on our arms or permanent radiation tattoos.

I love the way every personal tattoo has a story behind it. (I also have three birds on my shoulder that symbolizes my three kids growing up and spreading their wings).  My new radiation-cover up tattoo is a constellation of hearts with a sprinkling of stars. A purple star has replaced the ugly radiation tattoo. One of the hearts is for my husband Mike, who has been my unwavering rock these past few awful months. (I didn’t think a tattoo of a rock on my boob would be very attractive).   The other heart is for me, to remind me to love myself. I’d post a picture, but the tattoo is in my cleavage. I know my extended family already think I share too much on my blog so I won’t mortify them further by posting boob pictures.

It hurt to get the tattoo, especially the part near my sternum, but Mike was there to hold my hand, exactly as he’s done the past eight months. Tears leaked out of my eyes, not because of the pain, but because I felt grateful my treatment is done, my cancer was caught early and I’m alive to tell this tale. My new tattoo is a symbol of my own story having cancer. This is my story to tell, not cancer’s. Slowly, slowly, I’m taking my power back, one heart in my constellation at a time.

hearts2

cancer isn’t a competition

Screen Shot 2017-08-18 at 2.09.26 PMWhile I’m a newbie to the cancer world,  I have been the mom to a kid with a disability for 14 years.  This doesn’t make me any kind of expert – it only makes me wary and tired.

In the disability community, I have detected a weird undercurrent of competition.  Whose kid is *more* disabled and requires more care?  Whose kid has been in the PICU? Who has an invisible disability?  A visible one?  Governments also love to make funding decisions based on selectively-chosen diagnoses.  Bureaucrats decide who needs support or respite or childcare, not families or people with disabilities themselves.

All this competition for dollars, compassion and care has fractured the disability community into tiny silos.  When we are torn apart, we are weak.

The best people rise above this competition.  I love when I connect with a mom about what we have in common (how awesome our kids are as well as struggles with schools, health care, government funding and society), not purely what our kids’ different diagnoses are.  Aaron has much in common with kids with different syndromes/stuff going on with them than Down syndrome (and he smartly doesn’t label his friends based on their diagnoses).  The same is true with cancer – I’ve been blessed to meet many folks in the chronic disease world the past few months who have been kind and supportive to me.  They don’t have to have the exact same thing I do to offer empathy on topics like body image, pain or identity.  Together we are all stronger.

After becoming a cancer patient, imagine my surprise that while breast cancer campaigns have done a lot to raise awareness, fundraising campaigns do not benefit me as a patient in any way.  I received medical care at our cancer agency (at no direct cost to myself, thanks Tommy Douglas) and even pick up my prescription at the cancer pharmacy so it is covered by the hospital.

But any ‘extras’ I might have required for my mental, emotional or spiritual health come at a cost.  These are available in the private sector and for those who either have insurance or can afford it.  Such is our two-tiered Canadian health system.

There are other tiers in cancer as well.  Have lung cancer?  Expect constant questions if you smoked (and so what if you did?).  Have skin cancer?  Ditto the questions about tanning or sun exposure.  Have any kind of cancer at all?  Many snide remarks about your ‘unhealthy’ lifestyle will be slung your way.

I consider this dumping on people who are the most vulnerable – the ole ‘blame the patient’ phenomenon.  This happens in the disability world too, with the dreaded:  why didn’t you get prenatal testing question that is asked of families with children with Down syndrome.  Isn’t just having cancer (or a baby with a disability) enough for a little bit of kindness?  It feels like we are all competing for a finite amount of compassion in this messed up world.

Dig deeper and breast cancer has its own weird pecking order.  Mastectomy (single or double) or partial mastectomy.  Chemotherapy or no chemotherapy.  Radiation or no radiation.  Estrogen blockers or not.  I didn’t have chemo and have felt that I don’t fit into the traditional world of breast cancer.  One nurse said to me:  ‘well, radiation isn’t as bad as chemo.’  Which I’m sure is true, but because I didn’t have chemo, radiation was indeed the worst thing that happened to me.  It wasn’t a walk in the park at all.  In fact, the first day I had radiation was one of the worst days of my life.  But I’ve learned to bite my tongue because I know there are others who have been through much more taxing treatment.

This moves into prognosis too:  NED? (No evidence of disease, the ‘survivors’) or mets (metastatic breast cancer, woefully ignored and underfunded)?

The only way to temper this strange competition in the health care world comes from wisdom I heard once from a spiritual care leader at the children’s hospital where I used to work.

She said:  You have your story and other people have their stories.  It is okay for these stories to be different.  

Let’s embrace each other’s stories without tearing each other down.  Let’s recognize that we have more in common than not and stop allowing governments, society and systems to fracture us apart. As a wise therapist once told me:  you can’t lose if you don’t play the game.  Opt out of comparison.   If we make it safe for every patient and caregiver (and health professional, too) to tell their stories – even if their stories are different than ours – then all the things that separate us will magically disappear.