the art of listening

judge

Please hear what I’m not saying:  the art of listening in the clinical encounter is one of the most important articles that I’ve read in a long time.  It was written by Mary T. Shannon, a social worker, and was published in The Permanente in 2011, a medical journal with a focus on medicine and the humanities.  In the awesomeness that is Twitter, this article was recently tweeted by Isabel Jordan, founder of the Rare Disease Foundation, and before that, shared by Marie Ennis-O’Connor, a health blogger in Ireland. Twitter is my best curator of the Internet.

Please hear what I’m not saying has had a profound effect on me.  I’ve shared it widely with my colleagues in the health world.  It inspired me to buy the book The Spirit Catches You and You Fall Down by Anne Fadiman, which is actually a brilliant analysis of the vast cultural differences between patients & families and health professionals.  I’m planning on writing more about The Spirit Catches You, but in the meantime, here is an important quote about it in Shannon’s article:

“…the author tells the story of a Hmong patient who was being referred to a specialist for further treatment and, instead of inquiring about the physician’s skill or credentials, he asked, “Do you know someone who would care for me and love me?”

The article continues to eloquently express so many topics that are dear to me:  the hierarchies in the health system, the professionalism that clinicians hide behind, the breaking of trust between patients and clinicians, the deep-rooted need for compassion and the basic human desire to be listened to.  I can’t do this article justice – please just click on the link and read it for yourself.

There are so many pieces of Please hear what I’m not saying that speak deeply to me about the art of listening.  I’m struck with how many ‘complaints’ in the health system are not actually complaints at all.  Most times they are constructive feedback that is disguised as a ‘complaint’ – feedback that is actually valid suggestions that can be used to improve the quality of an experience in a hospital environment.  That is, if the ‘complaint’ is listened to by staff in a value-neutral way, with this positive lens:  complaints are not negative.  They are merely constructive feedback that staff can reflect upon to improve care and service.  There are always good reasons behind a ‘complaint.’

I’m more interested in that WHY behind a ‘complaint’.  The why often sits in pain or fear, and many times it stems from broken trust between the patient/family and a health professional.  This erosion of trust may have been due to an experience that even happened many years ago (sometimes beginning right when a diagnosis or news is disclosed and the journey in health care begins), but patients/families carry the burden of these experiences around with them.  It is up to every subsequent health professional to help to mend that broken relationship and build that trust again in health care in partnership with the patient & family.

What is almost universal, and hides in the subtlety of patient stories, is a theme of not feeling heard or listened to.  Please hear what I’m not saying validates my strong belief that the way to honour patients and families and to help them heal is to listen to their story in a respectful way – through active listening.  It is through this listening that health professionals can demonstrate they care and help mend that broken trust.  As Mary T. Shannon carefully points out, every person desires to be cared for and loved.  As I say, people will care for themselves if they themselves feel cared for.  This is a very powerful notion, and it sits at the very core of the care in health care.

holy hospital parking fees, batman

perhaps the best hospital room view in the world

                               perhaps the best hospital room view in the world

My husband was hospitalized for four days earlier this month.    It was then that I realized that my feelings about the Canadian health system oscillate wildly between extreme outrage to heartfelt gratitude.

I was shocked and outraged by the state of the Emergency Department waiting areas.  Two words:  War.  Zone.

I was grateful for the care once my husband finally accessed the inner sanctum of the Emergency.  I overheard many interactions between physicians and patients – and they were overwhelmingly kind and compassionate.

I was mildly outraged by the amount that I spent on parking at the hospitals over four days.  It was a grand total of:  $175.  Holy hospital parking fees, Batman.  Now, I can afford this outrageous cost.  But what of others who can’t?

I was so thankful for the physicians (and various residents, interns and medical students) who worked hard to figure out what was going on and then fixed my husband and sent him home.  We always knew what the plan was, what the next steps were – and this alleviated a lot of anxiety that is normally associated with uncertainty.  The communication by the docs there was outstanding.

As Anne Lamott says, there are only two prayers in the world:

Help me help me help me.
and
Thank you thank you thank you.

Thank you to the folks at Vancouver General Hospital for helping my husband when he was in need.

(But holy cow, can someone do something about the exorbitant parking rates?).

keep on spreading that love

spreadingloveAn essay I wrote for the Canadian Medical Association Journal called About Dr. Darwish now has public access.  Hurrah!  (I was cursing the obligatory paywall it was hiding behind for a year after publication in May 2014).  But here it is.  It is free for the reading.

I share this story widely in my work with health professionals.  It was written in honour of Dr. Azza Darwish, who was Aaron’s pediatrician after he was born.

This story says to every single person who works in health care: you have the power to put patients and families on a path of strength and hope.  

Azza Darwish did just that the years we were blessed to have her on this earth. Her memory lives on every time there is a kind and compassionate interaction in the health care system. Let’s all keep spreading her love.

making time

IMG_7526My husband and I have a date booked every two weeks.  I’m on a second marriage, and I’m no fool when it comes to marriage maintenance.  Last Sunday we meandered over to Deep Cove, which is a gorgeous little town on the North Shore, about half an hour from our house.

We stopped at a deli and picked up Italian sandwiches for a picnic at the beach. We munched on our lunch and watched the kayakers drift out to sea.  Then we wandered aimlessly up and down the beach trails and scrambled over rocks (silly us, in our flip flops).  We ended up at the village and indulged in maple doughnuts at Honey’s Doughnuts.  I will admit to being a sucker for independent gift shops, so I stopped along the main street at Ahoy and Room 6, and it was at one of those shops (I cannot recall) I stumbled upon a gorgeous magazine called Uppercase.  Buried inside was a smart article called Space/Time by Christina Crook.  It was there that I found this quote.

A common symptom of modern life is that there is no time for thought or even for letting the impressions of a day sink in.  Yet it is only when the world enters the heart that it can be made into a soul…Thomas Moore, Care of the Soul

And that’s all I have to say.  Step away from the computer.  Put away your to-do list.  Go outside.  Make the time to sit amongst the trees and the birds and get lost in your thoughts. For this is but our one precious life, and we must make time for what matters.  xo.

we have a long way to go, baby…

I spent three hours with Aaron in a clinic today.  It was a morning of misery.  Here is my raw and unapologetic feedback from this morning’s appointment.  Sometimes I am very tired of being polite.  Health professionals, I KNOW you can do better.

For Reception staff

1.  Don’t be curt.  You are not working in a tire factory.

For Medical Students, Residents and Physicians:

2.  Don’t call my son buddy.  He’s not your buddy.  His name is Aaron.

3. Don’t call me Mom.  I am not your mom.  My name is Sue.

4.  Aaron is not a ‘Down syndrome’ boy.

5. Talk to Aaron directly.  It is exceedingly insulting to him to ask me how old he is and what grade he is in when he’s sitting right there in the room.

6.  Stop asking me if I knew prenatally that Aaron had Down syndrome.  What relevance is this question, EVER?  I’ve been distraught about this stupid question for years – see this essay I wrote in 2010.  Stop this practice.  Now.

7.  There’s no need to remind me that I don’t live in ‘rich’ Alberta when I ask for a referral to a pediatric dietitian (which I am not given anyhow) and wonder why we don’t have coordinated medical care for children with Down syndrome.  You might call me entitled.  I might say that the lack of services in this province has more to do with government and health system priorities about how they choose to spend their money than it does from a lack of wealth from oil revenues.

8.  Don’t call my son obese when he is SITTING RIGHT THERE.  He might have Down syndrome, but he’s not stupid.  He understands more than you will ever know.

9.  Don’t assure me that the lab is open, when it is not, and I have to haul my kid in and out of buildings, and up and down stairs to find the poorly marked alternative.

10.  Don’t merely shrug off a medication error in my son’s prescription – that if I wouldn’t have caught and brought to your attention would have resulted in him taking double the dose he required.

It took all my willpower to remain polite during this experience.  But starting with the interaction with the receptionist, I had a ball of anxiety in my stomach and my teeth were on edge the entire time.  I’m still in shock that there were TEN unfriendly interactions in ONE appointment.  It was a case study about how to be family and patient UNfriendly.  I started texting my husband in ALL CAPS which is never good.

There were moments of grace that saved me:  when Aaron and I finally walked out, we passed a mom with a little girl with Down syndrome.  We exchanged shy smiles and hellos. That felt good.  Then my boy and I had a very ordinary afternoon having lunch at Subway and browsing in the Apple Store.  By the time we drove home, with Pitbull music blaring, I had (mostly) shaken off the whole experience.

What’s left is a residual of disappointment with not the health system, but the people who are supposed to be caring for and serving our children. Patient and family centred care?  We still have a long way to go.

amazing grace

On the eve of the American election in 2008, I went down to DC and met up with my American friend, Melissa Steele, to volunteer for Obama in the fading days of his campaign.  I was very fortunate to be at the Washington Post party the night Obama won.  I will never forget the scene after the CNN commentators announced that Obama took Virginia, and was in effect the President of the United States of America.  There was a surge of people to get urgently out of the building, and we all spilled out into the streets.  There, people were laughing and dancing and crying.  We walked past a grocery store, where the employees were jumping up and down and knocking on the windows, eager to join the fray of the celebration.

I’ve watched Obama over the years struggle as President with the bureaucracy, politics and infighting in the government.  But although I don’t agree in all his decisions, I still believe in him and his message of change.  I also believe that he is one of the greatest storytellers ever.  He has this amazing talent to connect authentically with his audience through his words and actions.  I continue to be awed by his rare skill.

Yesterday, I watched the video of Obama delivering the eulogy at the funeral of Rev. Clementa C. Pinckney in Charleston, South Carolina.  Towards the end, he stops and hesitates.  Then he slowly starts singing Amazing Grace. This simple act brought me to tears.  I thought of of the people who died in the church, and the state of America regarding guns and race and hate, and it filled me with great sorrow.

Obama’s gentle gesture was to step outside his carefully prepared speaking notes to connect with his audience, and to reach out to them in the universal language of music.  It was beautiful and spontaneous.  I dearly hope that after he’s done his presidency he will have the freedom to return to inspiring and motivating people, through hope and belief, in changing this messed up beautiful world.

the perks of being aaron

Lest I give the impression that it is all doom and gloom having a kid with a disability – here is our reality to provide some needed balance.  YES systems are BAD.  YES some people who say they will help you DO NOT HELP YOU and this is especially BAD.

But also YES some systems are good, like most things to do with recreation, which are easy to access, and FUN.  Aaron plays Challenger Baseball, which is the most awesomely organized recreation activity for kids with disabilities EVER. You show up with your kid, whatever age, whatever difference they have, and they get assigned a peer buddy to hang out with and they have FUN.  I do not have to get my pediatrician to fill out a form proving Aaron has Down syndrome or have a psychologist administer an IQ test for Aaron to play baseball.  (Sarcasm intended).

(Special Olympics is pretty good, although they demand a cervical spine x-ray for kids with Ds – an x-ray that isn’t even relevant anymore).  

I don’t see Challenger Baseball or Special Olympics as anything ‘special’ – I firmly believe that my kid should play sports as easily as any typically-developing kid can.  Challenger, in particular, makes it easy for this to happen – for my kid to be active, be part of a team, learn some skills and have fun.  There is another group in Vancouver called Soccer Dogs that has a similar philosophy.

This past month has been crammed with some extraordinary activities for Aaron because he has a disability.  I’m totally ok with that, considering all the cursing and struggle he has in the health and school systems – any perks?  Bring ’em on.

The school arranged a day at the Playland at the PNE, which was sponsored by the CKNW Children’s Orphans’ Fund. That was super because it was adapted – shorter line-ups, lots of volunteers to go rides with kids.  In Edmonton, Northlands has a similar event in July called Magic Monday.

There was some pizza and bowling action for the kids with special needs at school on Friday…and a Challenger Jamboree (more pizza) and we attended the Lower Mainland Down Syndrome Society picnic at beautiful Belcarra – there was a nature interpreter who took us families on a tour of the sea life, which was very informative for us prairie folks.

IMG_7225This is a photo of a super activity from Vancouver Fire and Rescue Services.  Aaron and I received an invite from a lovely recreation therapist that I work with at Sunny Hill Health Centre for Children.

We felt very fortunate to be included in this fabulous event – which included even more pizza, real rides in real fire trucks round and round the block with the sirens wailing, and holding the fire hose and aiming at pylons, a building and (most fun) one of the Fire Academy students.  My absolute favourite part of the night was seeing the fire fighters lifting kids up from their wheelchairs into the fire trucks for a ride.  Now that was pretty special. I even got to go for a ride in the fire truck and I COULD NOT STOP SMILING.

I’m not even counting all the kindnesses, lollipops, cookies and extra stuff that I know this kid gets because he’s Aaron.  It is very important for me to pause and be thankful for the people who go the extra mile for our kids.   Lucky?  Yes.  Fortunate?  Yes.  Blessed?  Yes, that too.

The fact is that Aaron has a very good life – he is beloved and he is loved.  And isn’t that what we all want from this earth?