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.

 

the gentle hearts will help us heal in the end

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A painting given to my daughter, a gentle soul who is entering her third year of nursing school.

It is a commonly held notion that patients will only give feedback when care is either very bad or very good. Those who have ordinary experiences do not usually take the time to write a letter or fill out a comment card.  I’d like to commit to speaking up when things go well, as well as when they go poorly.  Here’s my story of a perfectly ordinary appointment.

Today I had time booked with a radiation oncologist at the cancer centre.  I think appointments with oncologists strike fear into most people.  It must be a strange job to be an oncologist and have people show up in your office terrified to see you.

This was my first time back at the cancer centre since my last day of treatment.  On the drive there, I was an anxious mess.  I drove as fast as I could in bumper-to-bumper Vancouver traffic and loudly played a Tragically Hip live album on the car stereo to give me some moxie.

Courage, my word
It didn’t come, it doesn’t matter
Courage, it couldn’t come at a worse time

My regular radiation oncologist was on holidays, so I was booked into see someone new.  I woke up this morning awash with anxiety thinking about this new doctor. What if he wasn’t kind? And yet another new person looking at my poor boob and this time a man to boot? Great. I might as well be marching through the cancer centre with no shirt on with the amount of dignity I have left.  I had to go to the appointment by myself, as my husband had to remain at home to look after our son. Being alone never helps my monkey brain either.

I eyed my bottle of Ativan before I left. Isn’t it ironic that the main reason I pop anti-anxiety pills is when I have an appointment at the hospital? I decided instead of taking a pill to park a few blocks away from the cancer centre and walk to see if the trek would help settle me down (it did).

I hiked through the leafy residential neighbourhoods, grabbed an iced coffee and snuck in the back through the parkade elevator. The sight of all the people with cancer waiting in the lobby always makes me sad. In fact, the whole building makes me sad. It isn’t my favourite place to go.

I dutifully checked in with the receptionist, who was pleasant enough, and sat down for about three minutes before my name was called. I have to say that the radiation folks are all very efficient – there’s very little waiting in that department. The nurse (I think?) who fetched me asked how I was doing. She didn’t share her name or her role and I didn’t have the energy to ask. We chatted a bit about burned boobs and fatigue and she left me alone in the room to change into a gown. The radiation oncologist knocked and came in a few minutes later.

He was a young physician with a gentle manner. He introduced himself and shook my hand.  He sat down in the chair while I was perched on the treatment table. I knew this was my last radiation oncology appointment and so I had my notebook with my list of questions for him.

In total, he spent almost half an hour with me. He never appeared rushed or glanced at the clock. He was both professional and friendly. He smiled and made eye contact. Except for my physical exam, he remained seated and clearly answered all my questions. It reminded me how important communication is for physicians. It must be challenging to read a patient when they first meet them to figure out how to talk to them like they aren’t stupid, but in a way they understand. Translating recurrence rates, statistics and risk factors into layperson terms takes talent and skill.

He wasn’t rushed and didn’t seem to try to be wrapping the appointment up in any way. I never felt as if I was intruding on his time. He was there for me for the entire half an hour. He said a number of times – if you ever want to come back and see us, just give us a call. He shook my hand again when he got up to leave.

I walked back to my car feeling calm and relaxed. I felt as if I was taken care of, mostly because of how this young physician behaved and not what he did. His friendly, calm, unrushed manner turned what could have been a stressful and upsetting oncology appointment into a perfectly fine oncology appointment.

I assert that the so-called bedside manner matters a lot. While our interaction might have been just an ordinary appointment, it meant much more than that to me. I’ve said it before but it bears repeating: it is these little things – a handshake, a smile, patience, eye contact, a calm manner – that mean a lot to us vulnerable, broken patients, every single time.

Medicine might cure (sometimes), it doesn’t always heal. This oncologist was not only a specialist, smart and brimming with lots of medical knowledge, but he was a healer too. And right now, I mostly need to heal.

Cheers to all the healers out there, who comfort and alleviate suffering just by holding space for their patients. Holding space is the ultimate demonstration of respect for patients.  I strongly believe that it is these gentle hearts who will help us heal in the end.

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.