i’m a difficult mom

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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.

 

democracy was born

This poem is dedicated to all my friends who are neck-deep in daily advocacy work for themselves or their loved ones.  Power to the people.

Democracy Was Born

Democracy was born
When we boiled the kettle
And laid a clean sheet
On the kitchen table.

Democracy was born
In the needle exchange
With two men, punched and bloody
There, democracy was born
When the young women, the Florence Nightingales
Took them out for a walk
Around the block of the shelter
For a bit of fresh air.

Democracy was born
In a conference hotel room
Sitting on a bed tipping a bottle of red wine
While three moms schemed advocacy efforts.

Democracy is never born
At the polling station
Around the boardroom table
At the bureaucrat’s office
Or in the hallowed chambers.

Instead it lives out loud.
In coffee shops
While breaking bread
On the steps of the legislature
And in the mean streets.

All the new ideas are babies born
Around the kitchen table.

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.

health squawk

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Rabble-rousing by truth-telling

Health Squawk is my new Instagram account where I share anecdotes about my travels in the health care system.  This is about unveiling the secrets of health care, which includes both the inspirational and the profane.

I believe in using our voices to change the world. The way patients and caregivers do this is by sharing our stories and insights. I dabble in topics that include having breast cancer and being the mom of a kid with a disability.

Do you have a Health Squawk to share?  A short quote illustrating something ridiculous or humorous in health care?  Email me at:  sue@birdcommunications.ca.

ps:  You are most welcome to share my images, but please do so with credit and a link back to this blog.

I am a Patient & I have had an Experience

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My treatment is over now and I am running out of excuses for naps, begging off obligations and almond croissants.  I am achingly exhausted earlier and earlier every day and I have been told this fatigue will continue for several weeks. This cancer treatment is killing my social life.

As my oncologist says, two minutes of radiation is like spending the day in the hot sun, so I’m lurching around with a version of constant sunstroke.  My boob is super itchy which is an annoyance but not debilitating. I asked the Radiation Therapists, why do some people get burned and itchy and some do not and they did not know.  I have no idea what research is going on over at that fancy Research Building across the street, but apparently it is not research on side effects like itchy boobs.

I promised not to be complain because I did not need chemo and I did not need a mastectomy and for those reasons I am lucky.  Or rather, I am a lucky unlucky person because I still have breast cancer and being diagnosed with cancer has really messed me up, mostly in my mind.  I hope this blog isn’t negative.  I hope I don’t sound like a victim. I’m just trying to be a real person.  My experience having breast cancer has been surprisingly complicated and not all pink ribbons and teddy bears.  It has shaken me to my core.

Two weeks ago, I had a voice mail message from a manager at the cancer agency.  Apparently someone had forwarded my blog and told him to call me to talk about my ‘experience.’  I arranged to meet with him and Mike and I showed up to his windowless office before one of my daily radiation treatments.

He was a pleasant fellow, new to his job.  It was clear I had been labeled a ‘complaint,’ when in fact I had not contacted them with a complaint at all.  I was only writing about my own personal experience for my own blog.  True, my blog is public, but it feels creepy that my blog is being monitored in this way.  I felt reported.  We chatted about the patient experience in general and I emphasized that I hadn’t complained, but that I did have some ideas for improvement.  He wrote down a few things and that was that.

Later, I asked the people who had forwarded my blog for an in-person meeting with them and suggested that maybe they could have asked me if I wanted to have a manager  contact me.  I would have liked some choice in the matter, as opposed to someone assuming I wanted a call.  I got the ultimate brush-off message back and my request for a meeting was totally ignored.

Feeling discouraged, I then followed up, sending on a couple of general videos about patient experience (this and this), asking to meet with the administrator in charge of Patient Experience.  I am a Patient and I have had an Experience after all.  I sent that email ten days ago and have not heard back. I can take a hint.

It has always puzzled me why patients with feedback are silenced and pushed away.  Don’t professionals learn through challenging situations?  Aren’t ‘complaints’ just constructive feedback that can be used to improve care and service?  Am I the most naïve person on earth?

With all this ignoring of my requests and emails, I’ve realized that I’ve been labeled as ‘difficult’ – maybe even ‘crazy’ or ‘hysterical’ (terms I’ve heard used by staff for families – usually mothers – at children’s hospitals).  This is humiliating.  As I told the manager, I want to help. Patients have good ideas and aren’t actually stupid.  But I do not have any credibility at this cancer place beyond being ‘only’ a patient.  To administrators, patients are a generic cluster of diagnoses, not real people with ideas or opinions.  We are all a bunch of nobodies.

It was silly, or maybe arrogant, for me to think they want my help.  When feedback from patients is solicited by hospitals, through tools like surveys and comment cards, it is okay.  But when patients approach them with feedback that is not overtly asked for, we are shut down, brushed aside, minimized, gotten rid of, seen as a problem that needs to be handled.  I see this now.  We are supposed to shut up and be grateful for care.  Me and my itchy boob will zip it for now and stop rabble-rousing with the organization (and please know that I am grateful for the care, and brought in nice chocolates for the Radiation Therapists to my last appointment) and move forward.

Maybe one day an authentic chance to give feedback will be offered to me.  I was given a patient satisfaction survey to fill out a few days ago, but it had only a tiny spot to write ‘one or two ideas for improvement.’  I dutifully scribbled in a couple of thoughts – about orientation and waiting rooms – but I actually have about 100 ideas for improvement, but there was no room for them on the page.  No matter.

Currently, I am sick of the whole health care system.  Now is the time for me to rest, begin healing and scratch around to find a little bit of peace in my heart.  There are books to read, walks to be taken, music to be listened to and, most important of all, people to love.  Thank you to all who have shown up for me.  xo.

you are enough

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Here’s Aaron, age 13, holding our sign at the Women’s March in Vancouver yesterday.  He is no stranger to protests – his dad took him to an anti-pipeline protest a couple of months ago.  We pretty much bring him with us wherever we go.

How do you explain to someone with Down syndrome about what a protest is?  We’ve been talking about injustices in the world with him for a very long time.  We show him articles in the paper.  He helps us collect petitions for campaigns.  We watched the US Presidential debates.  We sit on our bed and giggle at Saturday Night Live’s monologues.  In November, we had to explain our neighbour’s election results to him.  We talked politics with his older brother when he was in town last week from America.  (His brother’s short summary:  we are screwed).

Don’t think that Aaron doesn’t understand, or that we are confusing him.  He totally understands.  Last year during Canada’s election campaign, he turned to us and asked, “Why doesn’t Stephen Harper like brown people?”  Then, at a youth workshop for people with disabilities, in response to a talk about consent, he put his hand up and said, “Donald Trump didn’t have consent!”  No he didn’t my boy.

We had to explain the ‘F’ words on signs at yesterday’s march.  Also, that pussy word, which strikes me as being taken back by its rightful owners – women – as it should be. I told him it was another word for ladies, but only ladies can use it.

At the march, which was more like a slow walk,  we rounded the corner at West Georgia, and the crowd stopped in their tracks in front of the gleaming Trump Tower.  I had only driven past it before, and had never seen it up close. There were security guards standing in the windows, laughing at us.  A hush grew over the protesters.  Then someone raised their hand in the silence and extended their middle finger.  Then someone else did.  Young people, grandmas, everybody…fingers shot up in the air.

Aaron stood there, his eyes huge.  He knows what the middle finger means.  I leaned down to him, “do you want to give the middle finger to Trump?” “CAN I?” he said, not believing his luck – to be given permission for something so forbidden.  “Yes, but only for Trump – do you promise?   Nothing else.” I said.  He nodded and raised his short arm, his finger extended.  The lesson here?  There are times in life you have to say fuck you.  But save that fuck you only for special occasions.

People were at the march for all their own reasons:  to represent people who have been awfully and horribly marginalized, to protest climate change, to support love, to rev their feminist engines.  There were a lot of white liberal people – ourselves included – who have been woken up.  We were there for two reasons – to represent women who are caregivers who are invisible and uncounted.  And for our boy – he who belongs to a community that is systematically marginalized, ignored and discriminated against by real-life people and our own federal and provincial bureaucrats. IN CANADA.  Discrimination against people with differences is not just an American issue – let’s not be too smug about this in Canada.  I will continue to not shut up about this.

For some of us, it is easy to show up at a protest (never forget that for other people it is not so easy).  These people march and protest every day at their keyboards, at appointments, at kitchen tables.  But a march only heightens awareness – it does not actually create change.  That’s where the hard work comes in.  Be vigilant.  Speak up in the way that you can.  Organize.  Call out injustices.  Dare to be visible. To paraphrase our sparkly protest sign which paraphrases Brene Brown, Aaron is enough and you are enough too.

You take your kid with Down syndrome to a protest for this reason – to show him that he has a voice and that it is his job to stand up and use it.  Are we pushing him to be a self-advocate?  Perhaps.  But if Aaron ignores the evil in this world it will be at his own peril.

what inclusion means to me

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I’ve been agonizing over preparing a presentation all week.  For creating a talk is like crafting a story – it is carefully pieced together to engage the audience early on, to create a safe space for listening, to allow them to feel.  This is trickier than you might think.  I say this from hard-fought experience of crashing and burning onstage – misreading your audience is the absolutely worst thing you can do when you are behind a podium.  I live in fear of it.  This is a hell of a way to make a living.

I was asked to speak to all the teachers at my son’s high school about What Inclusion Means to Me.  There would be about one hundred educators in the audience on their Pro-D day.  I sweated out my approach, talking to the teacher in the Access Program (Burnaby’s special ed) who had kindly recommended me, the physics teacher who was the organizer, and many families who had kids with differences in schools across the provinces.  I was desperate to understand my audience, to not misstep, to represent other families well, for I had a lot of skin in the game.  This is the high school where Aaron would be for the next six years.  I could not screw this up.

I had spoken once before to a teacher/parent audience on this same subject, almost three years ago in Alberta.  My stumble then was not to include any research about the other kids in the school – the ‘typically developing’ kids, many of whom were travelling on a strong academic path.  One mom had angrily protested from the back of the room:  your kid is taking away from my kid’s teaching time!  I have recognized over the years that it is crucial to address barriers and concerns that the audience is holding early on in the presentation, for if you don’t, they hang onto those concerns during the entire talk, and this is a barrier to the listening.

This time I was more grizzled and wiser (but alas, still not perfect – is there really such a thing?).  I drew upon others for expertise in my talk.  I don’t know one thing about adapting or modifying curriculum, so I showed Shelley Moore’s great bowling video.  I leaned on Ian Brown’s wisdom about the value of people with disabilities.  The moms from my Family Inclusion Group Facebook page kindly offered up some wonderful quotes about our kids being brave, and presuming competence.  I remembered the young man, Ryan, who has autism and graduated with my daughter three years ago, and read that little essay.  Two local family leaders, Karen Copeland and Suzanne Perrault, helped me immensely with pep talks and information. I was very aware of not being self-serving – not only concerning myself with my own son’s experience, but with his colleagues’ experiences, too:  those who used wheelchairs, those who were non-verbal, those identified with ‘behaviour’ challenges.   I had many people behind me in spirit for this extraordinary opportunity:  for a mom taking up a morning in a high school’s Pro-D day is a rare sight indeed.

And what does inclusion mean to me?  In the end, I talked about our journey with Aaron – from when he was first diagnosed (the baby we expected was not the baby we got) to my struggles with my own fears about people with disabilities when Aaron was born, embedded in my head from my junior high days in 1974 (if you are going to have a stereotype, at least have an up-to-date stereotype).  I acknowledged the good work teachers do – how busy and exhausted they are too, and asked them to reflect on their why – why they chose teaching.  I talked about how inclusion was so much more than academic inclusion inside a classroom, how it was about inclusion in the hallways, at lunchtime, at school events, in sports, in extra-curricular activities.  I invited the audience to think of one way educators and the other students could include the kids from the Access Program in the school, no matter how simple:  learning the kids’ names, giving high fives, starting up a Buddy program, picking one thing from their class lesson to teach them each day.

My goodness, as I write this out, I realized I covered a lot of ground.  I’d had better practice what I preach about presentations, and that is:  Identify your intention.  Pick three key messages.  Know thy audience.

My intention was to touch hearts to change minds.  My key messages were about the value of children with disabilities (the disabled do the work of love, says Ian Brown), expanding the definition of diversity to include different abilities, and to point out how we are not preparing the high-achieving students for the real world if they do not know people who are ‘the other.’

I had to pause a few times during the talk to catch myself from crying.  This topic is deeply personal to me, as Aaron’s school experience is everything to us.  We chose to live in Burnaby based on the school district.  We bought a condo close to the school.  I resigned from my job to be more visible and available to support his school experience.

Scanning the audience, I knew others were crying too.  Maybe they had someone with a difference in their family.  Maybe they were remembering the feeling of being left out.  Maybe they were triggered to recall why they chose teaching.  At the end, the applause was more than polite, and I had a patient line of teachers waiting to chat with me.  It tears me up to think about how much these educators want to reach all children, but sometimes they just don’t know how.  This desire is everything.  Change happens with just one step at a time – the first step is the most important one.   This is the beginning of belonging, one high five at a time.

Inclusion to me means finding love + belonging.  It means taking the time to understand another person’s perspective, to feel empathy, to demonstrate compassion.  These are the exact same messages I share with health care audiences, as I’ve realized that these concepts are deeply universal.

In the end, for me, everything always circles back to Raymond Carver:

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Beloved on this earth.  That’s what I want for my children, for myself, and for you too.  xo.