two steps backwards

See when it starts to fall apart
Man, it really falls apart – Tragically Hip

I am watching across Canada as the patient and family engagement movement in hospital settings is taking two steps backwards.  Councils are being disbanded, patient and family staff members (whether they are paid or unpaid) are resigning or being forced out of positions and are being replaced with clinicians.

There is a real fragility that underlies the patient engagement movement.  If patients and families behave themselves, then all is fine.  The minute there is a change in leadership, or something gets hard – like an ethical issue comes up or there is conflict – then BOOM it is over.

It seems as if this movement is so precarious that it can only survive when things are going well.  I define going well as: patients and families mirror their behaviour as close as possible to the behaviour of clinicians and administrators. We must dress like them, talk like them, show up when they tell us to and agree with them. Of course, this erases any hope for diversity and leaves the pool of engaged patients university-educated, articulate and economically well-off, just like the clinicians and administrators themselves.  Patient engagement quickly becomes doomed the moment there’s a sniff of any difference or contention.

There is now a trend throughout the country to replace paid families or patients with health care clinicians in patient engagement roles.  I think this is because:

  • The patient/family engagement movement has become too successful.  We have amassed too much power in the eyes of administrators.  This, ironically, means that engagement has become no longer tokenistic and is finally meaningful.  But to have power you have to take power – and administrators and clinicians simply aren’t willing to give their power away.
  • Paid family members and volunteers are not ‘professionals’ (nor should they be, especially if people are truly looking for diversity) but health care is built on the structure of professionalism.  Having laypeople make decisions in ways that are not tokenistic is just too much for most bureaucrats.
  • The way patients/families are treated at the organizational level mirrors the way they are treated at the point of care.  If there is bad morale and low patient satisfaction at the bedside, then efforts in patient engagement at the organizational level will suffer too (and vice-versa).
  • Many people in senior leader positions do not understand the role of families/patients in organizations.  They might understand the bedside engagement, but the patients in organizations concept is new and poorly understood.
  • Health care culture is also exceedingly slow to change to new ways of doing things.  Patient engagement at the organizational level shakes the status quo. In the Canadian health care system, the status quo does not wish to be shaken.
  • Patients or families in paid positions, on councils or committees do not have a common job description, standard training or defined core competencies. In other words, they are not regulated in any way.  The health care environment is one that demands structure and regulation in order to gain credibility and respect.
  • Patient engagement still butts up against some professions and threatens them (I’m thinking of those clinicians who think it is their job to advocate for patients, not the job of patients and families themselves).

Replacing patient and families with clinicians swings the pendulum back to where we were 15 years ago.  Clinicians are now speaking for us instead of creating environments where we can speak for ourselves.

I’ve laid out the reasons for this problem and will continue to ponder solutions.  I would suggest that patients and families first abandon any tokenistic work right now and search for the rare environments where true engagement is still happening.  Be picky about how you spend your time.

For instance, my colleague Isabel Jordan has found success as a family partner in the area of research.  While some hospitals still have the reputation of being champions in patient and family centred care, meaningful engagement in the hospital world is becoming rare.  If you find a place where you are being treated as a respectful partner, hang onto them tightly.  These scarce places seem to be going the way of the dinosaur.

It is time for patients and families to regroup and rise up again on our own and abandon the shackles of the health care system.  How do we do this?  I think the answer lies outside of the system, not within it.

One thing we can do is to keep telling our stories on our own platforms instead of politely waiting in the wings for conferences, hospitals or universities to extend us invitations to share our experiences.   Use your voice now.  While the system now seems to prefer that professionals take over speaking for us, never let them steal your story.  Your story is the one thing that is yours. Protect it fiercely.  Now is the time for us to take our power back and we will rise up again, one story at a time.   xo.

Edited to add:  I’ve written about both best practice + poor experiences in patient engagement here: here, here, here, here, here, here, here, herehere, here. 

advocate me

sue patient

This post is a follow up from my interview with Donna Thomson for The Caregivers’ Living Room and was written for + originally published on the Cancer Knowledge Network.

I never wanted to be an advocate. I’m a conflict-adverse introvert by nature. When my youngest son was born with Down syndrome, the title of Advocate was foisted upon me. I was also suddenly a Special Needs Mom. These were clubs I never signed up for.

Thrown neck-deep into the health system with a baby with medical issues, I quickly learned to speak up at specialists’ offices to get my questions answered. I figured out that most advocacy work is relationship-based, which means if you have a relationship with the person you are directing your advocacy efforts towards, things will go much better.

To paraphrase Guy Kawasaki, a magnificent cause can overcome a prickly personality, but why make things harder? I got to know my son’s clinicians and recognized the value of chitchat, being nice, giving thank you cards and remembering people’s birthdays.

I’ve been to protests and marches to call for fair government funding for people with disabilities. I’ve spoken to the media about policies that segregate my kid. I lobbied a children’s hospital to start up a medical Down syndrome clinic and then fought hard when an administrator tried to shut it down a few years later. I have a fierce reputation as a strong advocate and I would take a bullet for any of my children.

Last year my advocacy efforts came to a screeching halt when I was diagnosed with breast cancer. Many people said watch out cancer world, strong advocate Sue Robins is here – but all that bravado did not come to pass. I’ve often failed miserably at advocating for myself as a cancer patient. Newly diagnosed, I was meek, prickly and vulnerable. Intellectually, I knew what to do to speak up for myself in stark oncology clinics, but emotionally I sat as still as a little mouse, hunched over, compliant and broken.

It had been easier to advocate for my son. He was one step removed from me, and I could hide behind my role of the strong Mama Bear. Cancer is exceedingly personal and not one step removed at all, for my own cells have turned rogue on me. Breast cancer is an especially intimate sort of cancer – my breast tumour was an affront to my feminine body.

Sitting in exam rooms in thin gowns, exposing my breasts to strange hands and painful machines, I couldn’t figure out a way to salvage my dignity, never mind advocate for myself. I was stripped bare, as small as a little girl. Be brave and strong, they said. I was scared and weak instead.

People who knew me from the disability world told me to buck up, to advocate for myself as I had for my son. This call to action was not what I needed; it only served to pile guilt at my own helplessness on top of me. I simply craved compassion instead.

I slowly turned to writing to process my cancer patient experiences using both a personal journal and my blog. Even if I was unable to speak up during an appointment, I could write about it afterwards. On my blog, this caused me some trouble.

Cancer hospitals don’t like accounts of experiences, even anonymous ones, unless they are positive. Many of my own touches with health care were traumatic and a number of encounters were even unkind. I asked their patient engagement person if there was a way to share my photos I had taken during radiation and she told me they don’t ‘privilege’ one patient’s story over another. Then she added that the writing on my blog was raw. More injured, I left the public eye and turned inward.

This took funny turns – I signed up for a poetry workshop class and wrote about cancer in poetry. This was freeing – I could fictionalize my experiences and not be worried about being factual. A friend kindly showed me how to make a collage from my radiation photos that the cancer hospital wasn’t interested in. Art was a different way to speak up for myself. I was advocating, but coming at it sideways, not in a clinic room.

I poked my head back into published writing. A leader in radiation therapy asked me to co-author a journal article about my experience having radiation. A nursing professor asked me to write a guest editorial for her journal about suffering. I am hopeful my story leaves remnants for clinicians to pause to consider how patients feel when they are in their care. While this might not help me, this may help others behind me in the cancer world. Making meaning from my experience helps me heal too.

There are many ways to speak up for ourselves. Some people fundraise, lobby governments, give direct feedback to clinicians, and bring along support people to appointments to help given themselves a voice. Other folks just hang in there, endure and try to forget about the whole damn thing. That’s okay too.

Just as there’s not one right way to do cancer, there’s not one right way to advocate. The most important thing is to be kind and forgiving of yourself as you find your own way.

the gerber baby

Slide1

This is a slide from one of my presentations to health professionals explaining the reality of having a child with a disability.  This is a picture of a Gerber Baby, a so-called blue ribbon, or perfect baby.

This week, the Internet is abuzz that the new Gerber Baby has Down syndrome.

Screen Shot 2018-02-09 at 3.30.48 PM

Gerber Baby Lucas Warren

I’m obviously going to have to rethink my presentation slide.  My point was that we all expect a perfect baby when our children are born.  The honest fact is that no child is perfect, but with most children, this is something we gradually figure out as the years pass – particularly when adolescence hits and we get the inevitable call from the principal’s office.  Our job as parents is to help our children embrace their imperfections, for that’s what makes them – and all of us – human.

If you have a child with Down syndrome, the fact your child isn’t perfect is immediately pointed out by many people upon diagnosis.  I am happy for Lucas’ family and I know that having a baby with Down syndrome represent the Gerber Baby is a big deal for new families.  I’ve seen lots of sharing of Lucas’ image on social media and indeed, this news should be celebrated.  It is great that children with differences are starting to get a shot at modelling.  I pause here to say how I wish we were more evolved as a society and this wasn’t big news at all; that the advertising world chose images that represented the diversity of our world – including diversity of ability.  But that’s me with my rose-coloured glasses on.

buddy walk

Aaron is the dude in the middle

When my son Aaron was three, he was chosen to be on a campaign to advertise a Buddy Walk, an annual fundraiser for organizations who support people with Down syndrome.  We were thrilled to see his image on the sides of buses and up on billboards.

I understand how validating this Gerber Baby news is for us families who are anxious about the reception our children will be received in the world.  Lucas will be a role model for families with young children, no doubt.  We search for role models for now-14 year old Aaron, too – in television shows with stars with Down syndrome like Born this Way or through plays like King Arthur’s Night, co-written and starring Niall McNeil, who has an extra chromosome like my boy.  Aaron needs to see other people with Down syndrome in the public eye to show him what’s possible.  It affirms his very existence.

Having Lucas as the Gerber Baby will bring awareness to babies with Down syndrome. But will this mean the world will start to change to embrace disabilities?

“I’m skeptical this is a significant moment,” said David Perry on CBC’s The Current this morning.  I feel jaded saying this, but I agree with David.  We have to go further.  Awareness is not even a start to anywhere significant.  Awareness is just awareness.  We can’t pat ourselves on the back for being so progressive that Lucas’ modelling gig represents great change in a world that continuously and repeatedly discriminates against people with all sorts of disabilities.  That would naive and foolish.

I’ve written before about The Cute Thing.  Lucas is super cute, as was Aaron during his brief modelling career.  Aaron grew up and Lucas will grow up, too. We all grow up.  Teenagers and adults are not cute, whether they have Down syndrome or not.  Are those who are not cute – for whatever reason – simply discarded, if cute is all important?  Is it only those people with disabilities who make us feel better about ourselves (a disturbing phenomenon called Inspiration Porn, as explained by the late great Stella Young) the only people of value?

I don’t know the Gerber Product Company’s intentions by choosing a baby with Down syndrome to be their Gerber Baby.  I’d hanker a guess that it is for the same reason they choose any baby:  an attractive baby helps them sell products. The baby food business is big business.  I note that Gerber was sold to Nestle in 2007.  I’ve boycotted Nestle products since the mid-1990’s, ever since I found out about their unethical marketing of infant formula – allegations of which continue today.

I do so wish this news was associated with a more ethical company.

What I’m asking for is for us to consider: Is that all there is?  When a large corporation chooses a baby with Down syndrome to represent their product, does this mean that my son’s own life is going to improve?  Will he now have friends?  Will I have funding for therapies, respite or childcare for him now? Will he be able to find a job?  Love? Will he be safe as he makes his way in this world?  These are deeper questions that bubble up for me.

As I said about cancer, awareness is simply not enough.  It is a feel-good road to nowhere, unless it is followed up by real action:  a change in practice about how prenatal screening and testing is offered to women, a commitment to inclusive education + employment opportunities, equitable health care and governments who demonstrate they value all sorts of diversity.  For sure, let’s pause to celebrate the new Gerber Baby. Then let’s roll up our sleeves and get to work.

the real people behind canada waits

IMG_0640

Yes, it’s a slug.

Last November, Globe and Mail health journalist Andre Picard encouraged Canadians to share their wait time stories through the hashtag CanadaWAITS.

I am a woman whose breast cancer diagnosis last year took three months from the time I went to my family physician with a lump in my breast to the day I got diagnosed. I can’t find any Canadian standards online about what the ideal wait time should be before diagnosis, but eleven years ago, a CBC article indicated that the median wait time in my home province of British Columbia was 2.9 weeks in the Fast Track Program or 4.1 weeks for those not in that program, like me.

Fast forward to 2017, I waited a total of 12 weeks in British Columbia from the time I presented to my family physician to when I was diagnosed.

Some smart ass on Twitter tried to debunk the whole Canada Waits concept by tweeting that the reasons for the wait times weren’t known so wait time stories were meaningless. I have news for you pal:  stories are never meaningless because there are real human beings behind these stories.  Patients are not statistics.  We might be a N of 1, but 1 is enough.

I’d bet money if you bothered to actually ask the patients about their wait times, they could give you insight into the reason for the delays.

Here is my story, presented without commentary (save for the occasional descriptive adjective):

  1. Time between my initial family doctor visit and mammogram was over a week. I called the mammogram place to set up an appointment the moment I left my doctor’s office and the first available appointment was nine days later – this was for both a screening mammogram (in my right breast) and a diagnostic mammogram (a more extensive mammogram in my ‘suspicious’ left breast).
  2. I was told at the mammogram (in a public waiting room, no less) that I needed an ultrasound right away and they could do it on the spot. But that the radiologist said my family physician ‘forgot to check the referral box’ for an ultrasound, so I would have to go back to my doctor for another referral.
  3. I dutifully called my family doctor, who was mortified and immediately sent over another referral. The soonest I could get in for the ultrasound was three weeks later, despite the fact I had a ‘concerning’ mammogram.
  4. At the ultrasound I was told (again in a public waiting room) that I needed two biopsies. They could have scheduled these biopsies three days later, but I made the mistake of mentioning that I have a bleeding disorder. The radiologist at the diagnostic imaging centre said they would not do my biopsies and that I needed a referral to the women’s hospital – which my family doctor immediately arranged.  (Note:  I never did meet this mysterious radiologist who held a lot of power over me – all the messages from him/her were relayed through technicians and receptionists).
  5. I received a call ten days later from the women’s hospital, telling me that I would need to see a hematologist before they would do my biopsies, which were scheduled 33 days after my ultrasound because the breast clinic at the women’s hospital was closed over Christmas holidays.
  6. My biopsies then got delayed an additional 16 days because the women’s hospital refused to start an IV on me so I could be infused with a clotting medication before my biopsies. This had to be done at the hematologist’s clinic, at a different hospital, on the same day I had my biopsies. The hematologist’s clinic was full – hence the extra delay. (On the day of my biopsy, I was given IV meds at one hospital and then my husband had to rush me over to another hospital to have the biopsies done).
  7. I received a call with my breast cancer diagnosis one week after my biopsies. Two days later I was meeting with a breast surgeon, and two weeks later I had a partial mastectomy. I began radiation therapy 5 weeks later.

It is interesting to deconstruct these delays. The main reasons for my elongated wait time were:

  1. The radiologist refused to do an ultrasound on the spot because my family doctor did not check the correct box on the referral form = 21 day delay.
  2. The women’s hospital was closed for between Christmas and New Years = 10 day delay.
  3. The women’s hospital would not start an IV for my meds before my biopsy = 16 day delay.
  4. The rest of my delays seem to have to do with old-fashioned wait times at both the diagnostic imaging centre and the women’s hospital. This might have to do with the volume of patients and/or staffing or physical space issues; I don’t know. One delay had to do with me having a bleeding disorder, so I guess that’s my own damn fault. (Note: yes, I did advocate for myself, calling receptionists and politely and persistently asking to get on cancellation lists and pleading my cause – to no avail).

I was speaking to a friend who had breast cancer and was treated in Hong Kong over ten years ago, and she went from mammogram to surgery in FOUR DAYS. I am not sure what best practice is – maybe there is such a thing as being too rushed. But there’s a big difference between 4 days and 84 days.

Did my cancer grow during that time? Sure it did, but I had (have?) a sluggish, slow-growing type of cancer so who knows if this caused me much physical harm. The harm I did experience was of the emotional kind instead.

In 1999, a research study in British Columbia found: These findings confirm that, regardless of its outcome, waiting for definitive diagnosis after an abnormal screening mammogram is an intense and often agonizing experience for the women involved and for their families.

We knew of this ‘agonizing’ time 19 years ago and I don’t think wait times have decreased since then.  As Adriana Barton pointed out in her recent superb article, the emotional harm caused from cancer treatment is well researched, but from my perspective, there are little to no mental health support or services offered to cancer patients.

I’d add harm is caused even before you get a diagnosis – so this includes the excruciating waiting time thrust on the scores of people who have benign results, not just those of us who end up with cancer.

In my experience, the health system does not seem to care one whit about preventing emotional suffering and harm. Patients and families care, most clinicians care, but health care administrators and government bureaucrats who create these punitive policies and processes? Not so much. Wait times are shrugged off as the Canadian Way.

I only hope that the more we share our real human stories behind #CanadaWAITS that somebody with influence and a heart will finally pay attention.  Patients and families, refuse to be silenced, even if they write you off as difficult or hysterical.  This is undue suffering and this is not okay.

there’s not one right way to do cancer

I’ve been carrying Audre Lorde’s Cancer Journals around in my bag for months. There’s so much to admire in her book: her call to women not to be silenced, her refusal to go back to ‘normal’ and wear a prosthetic to please men or make the nurses in the oncologist office more comfortable.  She asks:

What are the tyrannies you swallow day by day, until you attempt to make them your own, until you sicken and die of them, still in silence? 

Then I read Elizabeth Wurtzel’s piece on having advanced breast cancer:

Everyone else can hate cancer. I don’t. Everyone else can be afraid of cancer. I am not. It is part of me. It is my companion. I live with it. It’s inside of me. I have an intimacy with cancer that runs deep.

You may have a strong opinion after reading this. Think about how that strong opinion comes through your own lens about how you think you would handle breast cancer/how you have handled breast cancer.

We all respond to cancer differently.  Our response depends on our own values, how we have responded to crises in the past and our toolbox of resiliency. Cancer is terribly personal, so our response is personal too.  In my exceedingly vulnerable state of being a cancer patient, I only became more myself.  I was not a best case scenario.

This comes to the thesis of this essay: because we are all different, we all do cancer differently.

When I first got diagnosed with breast cancer, I spoke to many women who had a cancer experience. Each of them told me different things: put your head down and get through it, f*ck that sh*t, be strong, endure so you can get back to your life, here’s your chance to go vegan, etc. Each had formed their own cancer philosophy which had evolved over time.

The only thing many of them had in common was the further away the woman was from her cancer experience, the more she wanted me to just put cancer in a box and forget about it, because that’s what she had done.

I lean towards Audre’s outlook instead.  She talks about, (having) survived cancer by scrutinizing its meaning within our lives, and by attempting to integrate this crisis into useful strengths for change. How could I have not changed? I’m not going back to the way I was before I had cancer. I see that as a waste of the cancer. But then that’s just me. Not everybody feels that way and that’s okay too.

My response to having breast cancer was very Sue. I searched for kindness and compassion from my family, friends and health professionals because that’s what I’ve always done, for my own reasons. I’m all about the soft stuff, so naturally I looked for it when I got cancer too. I struggle with fitting in and belonging, so I tried many support groups, outlets and cancer supportive organizations before I found my fit. I grapple with self-worth, so any rejection by family, friends and health professionals devastated me.

I’m a reader, so I read a lot in an attempt to understand how cancer feels.   I’m a writer so I wrote about it for many reasons – to bear witness to myself, to offer constructive feedback, to say thank you, to bitch and moan, to collaborate, to heal myself.

I bristled against certain cancer words to describe myself (survivor, warrior) before settling on the neutral breast cancer haver. Now I am a woman who had breast cancer which is apparently gone now but has a 10% chance of coming back. That’s a mouthful but one word doesn’t sum me up. Mostly you can just call me Sue.

And finally, my paid work has been in patient experience, so this lens is particularly strong. I was tuned into every aspect of my experience with health care – from how appointments are booked (archaically) to bedside manner (a mix) to the waiting room environments (mostly crappy).

I’ve included my favourite GIF at the top of this post. This is where we lift each other up – even if we don’t look or behave exactly alike or have the same diagnosis. Let’s give each other permission to be sick – and live life – exactly as we want to, without fear of punishment. When a friend or family member or patient gets cancer, it is not about you. It is about them.  Let them live own their story without your judgment.

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.

 

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.