how the little stuff is the big stuff

Screen Shot 2017-04-18 at 8.43.33 PMI’ve been to three cancer physicians the past three months since being diagnosed with breast cancer.  (Let’s all agree not to call my experience a journey or battle okay?).

There aren’t any navigator programs for cancer patients here, so my dealings have been directly with physicians.  I wish I had access to a nurse or nurse practitioner, but that is not how things are set up in British Columbia.

My first physician was a surgeon who was all business.  Yes, I know surgeons aren’t famous for their bedside manner and as far as I can tell, she did a fabulous job cutting out the cancer out of my body.  People say surgeons can’t get emotionally involved with their patients and still be able to cut them open, so I tried my best to understand this.  She reviewed my results with me too quickly for my muddled head, but thankfully I saw my family physician a few days later and she translated the pathology and my surgeon’s scribbles into a language I could understand.

My second cancer physician was the medical oncologist (shortened to the funny-sounding MedOnc in the cancer world).  I mostly saw her resident, not her. This oncologist kept calling me Ms. Robins which was disconcerting and made me feel like she was talking to my mother.  She was brisk to the point of being dismissive.  I don’t need chemo so she didn’t have a lot of time for me and waved my silly questions away.  It is true that she had other patients to see who had more serious kinds of cancer, so I tried my best to be understanding of her approach.  I took my puny little cancer and slunk away as fast as I could.

I have been a mess after each of these appointments, hand-wringing and second-guessing everything the doctors told me and ruminating on every word they said for days afterwards.  Ask my sweet husband – this has not been fun.  Frankly, I have been acting like a wounded animal.  I realize I was struggling to trust what surgeon and medical oncologist told me because I did not sense they cared about me.  Well, maybe they did care about me, but they didn’t demonstrate they cared about me. Also, I’m not a good mind-reader, so any caring they might have in their hearts went entirely undetected by broken (and admittedly-sensitive) me.

Yesterday I dragged my demoralized self to the hospital to meet yet another physician – this time a radiation oncologist.  The nurse ushered anxious me into the clinic room.  The first thing she did was she asked me if I wanted a warm blanket.  A warm blanket!  I love warm blankets.  This appointment was off to an unusual start.  My shoulders instantly relaxed and I breathed a bit easier, cosy under my coveted blanket.

Next, my new doctor knocked on the door and introduced herself to both me and my husband.  She was genuine and lovely.  She reviewed my pathology results in regular person language, leaning on gardening metaphors and pausing to ask what questions I had.  She asked me what kind of writing I did.  She patted me on the leg a few times, which gave me great comfort.  (There’s not enough healing touch in health care.  To me, that simple touch gave me a little peek into her caring heart).

She asked me if I wanted to ask my list of questions first, or if I wanted her to explain things and then I could ask any remaining questions afterwards. (I chose the latter).  A few times I started to say something and stopped, worried about interrupting her – and she immediately paused and gently said:  yes, yes, what did you want to say?  She did not appear rushed in any way, even though she had a roomful of patients in the waiting room.  She even shared her email address so I could ask any follow up questions when I got home.

By the end of the appointment, the wounded animal in me had disappeared.  The kindness settled me down.  I felt connected to my new doctor and that connection was blossoming into the beginning of trust.  This is more than merely being nice – it is about laying the foundation for a relationship.

All the little actions helped to heal my fragile heart – from the warm blanket, the introductions, her gentle approach, her hand on my leg and the way she held space for my questions. All this so-called soft stuff is so much more than just kindness.  With her words, gestures and actions, this physician was demonstrating respect and caring too.  It was not only what she did, but how she did it.

I might still have cancer, but I am finally at peace for the first time in a long time.  This is because I feel taken care of. These little things may seem like nothing to you, but in my current state of heightened vulnerability, they mean just about the world to me.

my why

Today I excitedly opened an email from a conference that I really really wanted to attend.  I had submitted an abstract called The Art of Storytelling:  how to craft stories to change the health care world.  I am pretty good at writing abstracts, had a solid creative presentation to pitch and have a decent acceptance rate for abstract submissions.  This was a conference I admired, in a city close to my eldest son, so I was crossing my fingers that I’d be accepted for a variety of reasons.  I clicked on the email in my inbox, holding my breath:

We regret to inform you that your submission was not chosen…

Well, damn.  I know Wayne Gretzky says, you miss 100% of the shots you don’t take. As a writer, I get rejected a lot (which tends to be radio silence in this digital age, not mailed rejection letters), but damn.  It always stings.

I’ve been floating around as of late.  I resigned from my paid staff position last month.  I’ve had two kids grow up. My youngest son hit puberty last year and is in a push for independence, which of course results in the slow rejection of the mother.  I miss hanging out with my daughter and doing girl things. I pine for my mom friends in Edmonton. Everybody here seems so busy – I’ve discovered that the laid-back west coast mentality is only an urban myth. I cannot even occupy myself with shopping for stuff and cleaning my big house – we’ve downsized by half and I have no more big house, no yard and no room (or desire) for more stuff.  This week we are in the midst of an odd blizzard and have been stranded up on our mountain.  I have time now to think, which is a terrifying concept in a world where we get caught up in the Busy Trap just so we don’t have a moment to ourselves.  The whole world is zooming around me so fast and here I am, just quietly sitting on a bench watching it go by.

Before I left my position, I had two wise colleagues separately recommend Simon Sinek’s TEDTalk to me.  It is called How Great Leaders Inspire Action, and while by title I’m no great leader, I do have a little sphere of influence, with my family, my company and myself.  I’d suggest it is worth 17 minutes and 57 seconds of your time.

If you don’t have the time to spare to watch it, consider this diagram:

why

(saved from:  varchannelmarketing.com)

If you are feeling a bit lost and lonely like me, or if you have the nagging feeling that what you do in life is not in alignment with your values, this approach can give you direction.  Sinek’s point (in business, and I’m extracting his message to apply to life) is that the why matters.  Why do you do what you do?  And that’s not what your position title is, or your quest to make money to buy more and more stuff – I challenge you to dig deeper than that.  Why are you on this Earth?  If we can all can answer our why, then the how and the what will soon become clear.

So I’ve had the time to think about this a lot (and won’t be wasting time preparing to present to that conference that rejected me, ha) and feel confident in stating:

“I share stories – and create opportunities for others to share their stories – to rekindle compassion in the world.”  That’s my why. All my meaningful work has been born from that why. Now I just have to trust that my why is the light I need to shine my own way.

over and above

Well, oh my goodness, get out a box of Kleenex when you watch this video from the Royal Alexandra Hospital Foundation in Edmonton.  My husband showed it to me in the waiting room of our son’s reading program.  I had to explain to his reading teacher why I was sobbing when I picked him up.  This story moved me deeply.

First, I love the way the video was shot – with very little dialogue, and the lyrics of the song filling in for actual words.  What happened needs no explanation – just watching the images flickering on the screen is enough.  Of course I also thought of my own beloved grandparents, who left this earth not that long ago.

I read somewhere, and I like to say:  less health care, more caring.  Less services, more serving.  And that’s exactly what this is about.  I’d also call it Over and Above – meaning for those who work in health care:  what have you done today that has gone over and above the call of duty?  And what if everybody goes over and above every single day?   That would automatically cause a tipping point and trigger the health care revolution that we are all so desperate for.

My challenge to health care leaders:  how do you create opportunities for staff and physicians to go over and above?  How do you reward the over and above?  The reason this story is so special is because what happened is so exceptional – in my own experience in the adult health system, anyhow.  What if we all worked together to make caring the norm?

(A special shout-out to visionaries like David Sheard who are doing this important work right now).

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.

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.

sacrificing empathy for efficiency

IMG_5927

(This gorgeous canvas was gifted to my gentle daughter, who is going into nursing school this fall).

Six years ago, near the beginning of my career in the world of patient and family centred care, I was at a Family Centred Care Conference hosted by a pediatric hospital.  I was in a session that was facilitated by the wonderful Peter Rosenbaum.  He broke us into small groups, and asked the question:  Family Centred care is….  Each group had to fill in the blank.

One nurse stood up and said, rather angrily, I don’t have time for family centred care.  I was sitting at a group of family representatives.  We all audibly gasped.  No time to introduce yourself?  No time to smile?  No time to make eye contact?  Family centred care is all those small gestures that mean a lot to patients and families.  It is these small demonstrations by health professionals that show us that you care.

However.

One element of family centred care that does takes time is listening.  Making space for people.  Listening with your whole self.  Minimizing distractions. Not rushing or appearing rushed.  And yes, sometimes you can effectively listen to what patients need in thirty seconds.  But many times listening means slowing down, pulling up a chair and sitting down for a while.

Alas, our health system does not compensate for this types of kindness or compassion.  Our Canadian system is either based on fee-for-service (see as many patients as possible) or it is driven by the need for efficiencies.  I’ve always been wary of philosophies in health care that are modelled after processes in car factories.  For human beings are not cars.  An interaction with another human being includes taking the time to get to know each other.  This is the only way to create a relationship that is built on mutual trust.

Dhruv Khullar wrote a poignant essay in the New York Times earlier this month called The Importance of Sitting with Patients.  In it, he laments a system that is so focused on the ‘altar of efficiency’ that it forgets the importance of sitting with patients.  Should hospitals really be run like businesses?  Does the race for efficiency sacrifice empathy?  I concur with Dr. Khullar and say yes, in its current form, it does.

But here’s what I think.  Visionary health leaders can add measures for compassion in performance reviews,  hire based on both heart and brains, share patient stories at committee meetings (or even better, invite patient reps to committee meetings), and celebrate acts of kindness in their hospitals.  If they can somehow figure out a way to compensate for listening, well then empathy can indeed function alongside efficiencies.

I read an unattributed quote on Twitter, and I think it is brilliant:  health care should be less about the care, and more about caring for people.  Less about services, more about serving people.  And caring and serving does take time.  Having worked in health settings for the past six years, I now feel for that nurse who stood up at that conference and said she didn’t have enough time to practice family centred care.  Because the health system has slowly but surely stamped out her passion for caring for people.

As Dr. Khullar says, there is tremendous value in having more time to spend with patients.  Let’s continue to build our own altar of empathy.  Six years later, I believe now, more than ever, that love always wins.  I know that it is the gentle people, like my own daughter Ella, who are going to change the world.

my soft spot for pharmacists

I have a soft spot for pharmacists.  There, I said it.  They are one of only a handful of health professions who actively recognize the value of the patient voice.  They have not forgotten that patients are the people that they are working to serve.  Pharmacists organize conferences and invite patients to share their experiences.  That’s pretty profound, and I think they are true visionaries.  (Talking amongst yourselves all the time doesn’t make for a revolution in the health system, folks).

I just had the great honour of co-presenting with Allison Wells, who is a fabulous mom and pharmacist at the Canadian Society of Hospital Pharmacists in Banff.  Allison did an exemplary job of sharing the story of her son’s adverse drug reaction in a hospital setting.  She eloquently gave pointers to the pharmacist audience, and stressed that they had to use their own voices to  speak up to ‘stop the line’ when errors are made.  I was so impressed with her passion to share her son’s experience in order to make change in the health world.

Dr. Peter Zed before her gave some pretty terrifying statistics about patients presenting to hospital with adverse drug reactions, experiencing adverse drug reactions while in the hospital, and also after discharge.  It made me want to stay as far away from the hospital as possible.  But it was also heartening to know that pharmacists are looking at the issue of errors with great seriousness and transparency, and that they make a huge difference in making sure that the hospital makes people better, not sicker.

My take-away from Dr. Zed’s talk was this – he showed research from Hong Kong that said that patients adhere to treatment plans better if they receive follow up care from pharmacists.  And I might be stretching this a bit, but what I heard is this: patients will care for themselves if they themselves feel cared for.

And as far as my presentation, which followed Allison’s?  My talk was about this:

IMG_6486I know in my heart that pharmacists get this.  The standing ovation Allison and I received afterwards was proof.  (My first one ever, wow).

This was an awesome, engaged audience of health professionals, with big brains and even bigger hearts.  Bravo to my noble pharmacist friends – carry on doing the good work that you do.