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. 

as we all carry on

Podcast-V2

I’ve managed to wrench myself from social media (although I cannot escape the clutches of Instagram) and this has freed up mental time during my daily walks.  If I’m in a beautiful setting, I walk listening to nothing – only the rustle of the leaves and the chirping of the spring birds.  If I’m relegated to strolling along an ugly urban area, podcasts keep me company.

White Coat, Black Art on CBC with Dr. Brian Goldman is in my podcast feed.  I was thrilled last week to hear my friend and colleague Isabel Jordan interviewed for an episode about PTSD in hospital settings.  She was clear and eloquent about the PTSD that has haunted her since her son’s PICU admission years ago.  This episode covers a lot of important ground: the painful procedures inflicted on patients; the lack of pain management techniques used by hospital staff; the need for mental health support for all family members who bear witness to traumatic hospital situations; and the associated lack of public mental health services in Canada. Isabel is especially poignant in her description of how her rare disease community has helped to heal her.

 Life isn’t just about being patched up.  It’s carrying on afterwards.
                                                                                                         – Isabel Jordan

I truly believe some of the trauma that happens in the hospital could be avoided with a more empathetic attitude.  I, too, have held down my young son with a disability while he was getting blood drawn. I wince at this memory, which surely has been etched deeply in his head.  It does not have to be this way.  Discovering EMLA, a numbing cream that I apply before his blood draw, was revolutionary to his experience.  Another mom told me about numbing creams  – not one health professional has mentioned it to me – ever – in the past 15 years.  (Check out the fabulous It Doesn’t Have to Hurt website for tips on pain management for children).  Clinicians, ask yourself:  Does it always have to hurt?

Us adults experience pain and trauma in the hospital too.  I have written about my experiences with health care on this blog and in a recent guest editorial with the Journal of Family Nursing.  The Affronts to My Human Body essay outlines my accumulations of scars throughout the years and during my recent treatment for breast cancer.

I know many hospital procedures are painful and this is sometimes unavoidable.  But I wonder how much pain is avoidable with a more compassionate approach.  The podcast Everything Happens’ last episode called Can You Hear Me Now talks about empathy in health care.  It offers a brilliant interview with Alan Alda and Kate Bowler.  There’s too much good stuff here to quote.  Just listen to the episode, especially if you work in health care.

Alan talks about connection, plain language and the curse of knowledge in medicine.  If I didn’t have a crush on him when I was a teenager watching Hawkeye Pierce in M*A*S*H episodes, I certainly do now.

At the end of the podcast, Alan turns the table and interviews Kate.  He asks her why she wrote her book and why she does this podcast.  She answers:

What is it like to live after you give up on some of your most deeply cherished lies, like everything is going to work out.  Are there still true and beautiful things that we can still learn in the dark?

To me, this echoes Isabel’s sentiment about carrying on after the trauma and through the pain.  Cheers to those who give voice to the stories that happen in the dark – through being brave enough to be interviewed, or by hosting podcasts or writing or just simply by being a listening presence and not turning away from the pain.  I think both sharing and listening to stories helps us all, as Ram Dass says, to keep walking each other home.  xo.

my lady bits

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First my boobs tried to kill me last year (when I had breast cancer) and then my ovary gave it a go too.  Here’s my story of my first responder and Emergency Department experience on Tuesday night.  Edited to add:  to understand the philosophy behind writing during illness, check out Sharon Bray’s wonderful blog called Writing Through Cancer.

It is 11:30 pm on a regular Tuesday night when I’m jolted awake with excruciating pain. It is as if someone has stabbed me in the lower right abdomen. It doesn’t go away or recede – just a constant pain as if I had just been knifed. Not like I’ve ever been stabbed, but still. I imagine this is what it feels like.

My only comfort is to sit up and fold in half over my sore side. Don’t touch me! I say to Mike, silently calculating what is the quickest route to pain medication. It isn’t having Mike figure out childcare and then drive me to the hospital and then wait in the waiting room. Call an ambulance I say.  I don’t care how much it costs.

Are they coming? Are they coming? I keep asking. I’m hyperventilating, shivering and my legs are tingly. I can hear the fire truck roar up six flights below.

Our buzzer rings and all I can see is three sets of large brown boots in my bedroom. They are asking me questions. I’m trying to answer. I can’t look up. They put an oxygen mask on me and leave the mask remnants behind in the bedroom.  They stand over me until the ambulance arrives.

Don’t wake up Aaron, I keep saying. Mercifully, my son sleeps with ear protection on (long story) and remains asleep. I get on the stretcher. I am keen not to traumatize him.  I keep having to straighten out so I can fit through doorways and elevators, but sitting up is agony and I hunch back over the first chance I can get, trying to fold over like an accordion. Someone starts an IV in my inner arm and I don’t care. The ride is bumpy, I ask for a puke bag and they give me Gravol. Nobody wants me to puke everywhere, including me. Someone keeps updating me on how close they are to the hospital. I don’t know if the lights are on, there are no sirens – I’m not dying, only in pain – there’s no use in waking up the entire neighbourhood. I’m trying just to breathe. The paramedics take bets that I have appendicitis.

My first time in the back of an ambulance and it is bumpy. Once we are there, I bumpity bump out of the ambulance. I finally look up to see the paramedics and thank them for being good guys. There’s mercifully no wait. I’m in a bed in a curtained room, there’s misery all around me and now it is 12:30 am. There are vitals and my heart rate has calmed down considerably. The gruff but thorough doctor who shows up says I don’t have appendicitis, for appendicitis doesn’t start suddenly like that. He thinks kidney stones but I’m like, noooo it’s an ovary cyst, which he shrugs off. I have cysty ovaries, I croak. I’m not making any sense or he doesn’t listen to me or both. I am a lady with lady problems.

The morphine makes me woozy but the pain is still there. Mike shows up, having woken up his sister to stay at the house. (Why didn’t he knock on the neighbour’s door? He dragged his poor sister out of bed, but I’m so grateful to her for driving bleary eyed up the mountain to stay with Aaron).

Mike sources a steno chair and sleeps on that. A nurse kindly offers him a blanket. I ask again for pain meds because the stupid morphine doesn’t work and Mike shushes me, thinking I look like I’m seeking drugs. I AM seeking drugs because there is a knife in my belly. I shuffle to the bathroom and then throw up my Tuesday night chili dinner into a cardboard bowl. I get a new pain med – a stinging IM needle in my arm – I don’t mind, it is a distraction from my belly pain, which I’m still trying to breathe through, one breath at a time. This is like labour with no baby at the end. They keep asking me what number is my pain and I keep saying: EIGHT! EIGHT! Like late labour! They give me Dilaudid, which my daughter Ella tells me later is four times the strength of morphine and THAT makes the pain finally go away. Or it makes my head think the pain has gone away – no matter, I have some relief, after three hours of writhing agony.

Some hours pass. I doze in and out, listening to babies crying, people screaming, some security incident. The meds make me don’t care.  It is morning and Mike has to leave to get Aaron ready for school. I’m waiting for my ultrasounds and I realize my meds must have worn off because I’m no longer in pain. The knife has been removed from my belly.

Of course the ultrasounds show nothing. There is a vaginal one too, how fun, with the condom-covered dildo camera. For my abdominal scan, the tech is annoyed my bladder isn’t full – I’m like – well they put me on NPO so sorry. I can’t drink anything. I can tell I’m no longer in pain or stoned because I’m getting pissed off. The tech is teaching a student which normally I don’t mind but it takes forever. She’s also talking to me as if I’m about four years old.

I wait in the hall on a stretcher afterwards for a long time and my doctor happens to walk by. He goes to check my ultrasound. It has shown nothing. I know this is because the cyst has already burst. He’s still talking kidney stones and I’m repeat, nooooo, I have cysty ovaries. He shrugs again. I’m another woman with woman problems. He’s a tough guy but his saving grace is his sense of humour. I make feeble attempts to joke about my cysty ovaries and at least I extract a smile from him.

I text Mike to come pick me up and a crabby nurse takes out my IV. I hold the bandage on my IV site for a while and when I let it go, blood starts gushing out of my arm. Um, excuse me? I stick my head out of the curtain. I’m a bleeder here. She sighs and gets me another bandage. I get dressed and sit on the bed to wait for Mike. She tells me to leave. I look around.  It is 9 am and the ward is empty.  I’m like – I don’t know where to go, an ambulance brought me in. You just follow the green line, she says crossly. I follow the green line outside and stand in the rain and the cold in my pajamas with no coat on and wait for my ride. I see how people are discharged into -40 weather and later die in a snowbank. Honestly, hospitals could say good-bye a bit better. They are like a bad, abusive boyfriend. Get the hell out! they yell when they are done with you.

I sleep all day and then sleep all night too. I think that pain has worn me down more than anything. Today is the next day and I’m tired too. It is grey and raining. I am reminded how complicated the lady bits are. I am grateful for faceless firemen, bumpy ambulance rides, chatty paramedics and almost all of the Emergency Department staff. I understand the desperation to get through that kind of pain. I am thankful that I remembered my labour breathing.

One breath at a time; that’s the only way we can get through. Today I cut off my hospital ID bracelet, scraped the bandage glue off my arm and am humbled once again by the fragility of this thing called life.

make space for the suffering

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The older I get, the more conflicted I feel about everything.  I hope feeling conflicted is in fact related to my growing sense of humility as I open up to other points of view.  The more I know, the more I know I don’t know.

I used to despise the word suffering, as it is misused all the time in reference to people with disabilities.  The horrific term ‘burden and suffering’ is often widely applied to human beings with differences, both before and after they are born.  I still call bullshit on this stereotyping of other human beings in order to categorize them as less human.

So I dismissed the word suffering outright until I was diagnosed with cancer last year.  It was then I felt the true meaning of suffering, as the past few months have been fraught with unresolved physical and emotional pain which was triggered by my cancer.  I continue to heal from that experience.

I encountered Carlyn Zwarenstein’s writing about pain a few months ago.  She invited me to look at the notion of suffering in her important book called Opium Eater, The New Confessions.   Opium Eater is a small but mighty book that examines the use of legal opioids to manage chronic pain, looking at the historical, economical and emotional aspects of alleviating pain. Carlyn deftly draws upon the literary world for understanding. Andrew Sullivan’s recent New York article The Poison We Pick also tackles the concept of pain.  He identifies pain as simmering underneath the terrible mounting opioid overdose deaths.  As he explains about opioids: It is a story of pain and the search for an end to it.

A year ago, I wouldn’t have comprehended the depths of such pain.  But today I have a glimmer of understanding.  While I am privileged enough to keep pain at bay with the occasional Ativan and regular therapy sessions, cancer has humbled me enough for me to glimpse at the great suffering in this messed up, beautiful world.

Part of my own healing has been writing.  A few months ago, I was asked by Dr. Janice Bell to write a guest editorial for the Journal of Family Nursing about my perspective on suffering.  It was published yesterday and is called Make Space for the Suffering.

I’m pleased that health care academic journals are starting to make space for the patient voice on their prestigious pages.  I believe the inclusion of the patient voice makes their pages even more prestigious (and legit).  This most recent editorial is a plea for health professionals not to turn away from patients’ and families’ pain.

I will continue to say over and over again – I’m a broken record – as I dare you, health professionals, families and friends, to draw upon compassion and not turn away from our pain:

Healers turn toward patients and families during their pain. A warm gesture, kind word, or gentle touch reminds us that we are not alone and makes space for our suffering. While health care can (sometimes) cure, it is love that will heal us in the end.

Unrest, the Film

As I lay in my own bed watching the film Unrest, it struck me as incredibly unfair that scores of patients (85% of patients are women), who have Myalgic Encephalomyelitis (ME) have to fight for understanding from the world every day. I am a woman healing from breast cancer, a kind of cancer that’s suffered from the exact opposite problem than ME – a pink onslaught of awareness that is teetering on overexposure.

I never had anybody question my symptoms. When I presented to my family physician with a lump in my left breast, the slow cogs of the health care machine began to move to put me on the treadmill to diagnosis. Once diagnosed, I was sitting at a surgeon’s office one week later and under the knife two weeks after that. Radiation came two months later and that was that (except for my struggle with my mental health collateral damage).

As Jennifer Brea so brilliantly illustrates in her film, ME has no such diagnostic machine. Early in the film, her husband Omar Wasow wisely advises Jennifer as they are on their way to the Emergency Department:

If you say too little, they can’t help you.
If you say too much, they think you are a mental patient.

What he says is true. Presenting at the hospital is tricky business. I’d add, there should be nothing wrong with being a mental patient, but of course there is. There’s plenty of stigma and disbelief that comes with mental or emotional symptoms. That should not be so, but it is. ME is not ‘just in your head’ but what if something else was? Care and compassion should not be dismissed simply because there’s been no found biological cause.

But of course I’m being naïve. Patients, and dare I say, women, are dismissed all the time. Even in breast cancer, common as it may be, women are, encouraged to deny the realities of their own body, as the great Audre Lorde says. Our side effects are scoffed at and dismissed, we are told we are lucky that we aren’t dead and to be quiet and be positive. There’s great pressure on those who have had cancer to ‘get back to normal’ and even worse, to be ‘better than ever!’ Nothing ever goes back to normal after a glimpse into death. But many in our families and in health care are uncomfortable with any narrative other than the ‘I’m cured!’ heroic story. This is not our reality.

There are many remarkable elements in Jennifer Brea’s Unrest film. Jennifer made the film from her bed. This makes me pause and wonder what able-bodied me has accomplished lately. She tells not only her story, but the story of other people around the world with ME too. This is not a story of redemption – there is no happy ever after. This is real life. She’s not afraid to be vulnerable and for that I applaud loudly. It is tough to put yourself out there, but it is absolutely necessary too. You witness her pain, her struggle and ultimately, the love of her husband too. Like Rana Awdish’s In Shock book, Unrest is a love story too. It is a story about caregiving administered with deep affection.  At one point her husband Omar tells Jennifer, you bring joy to my life every day.  This is a tender insight into what most people don’t understand about caregiving, as I say about caring for my son with Down syndrome – it is done for love.

My friend and former colleague Kathy Reid works in a pain clinic. She told me the first thing that she tells new patients is I believe you. So many times their pain has been scoffed at or minimized.

If people arrive at your doorstep in pain – any kind of pain – emotional, physical, mental, spiritual – do not dismiss them. Do not turn away. It is the job of the healer first to listen and then to believe.

To find out more about ME, check out the Tools section on the Unrest website. Us patients need to stick together – breast cancer, metastatic breast cancer, other cancers, ME, other chronic diseases. It doesn’t matter. The only way change is going to happen is if we pause in the fierce war to compete for resources to lift each other up.

I’ll end with quoting the entirety of Audre Lorde’s famous words from The Cancer Journals, dedicated to Jennifer Brea:

I was going to die, if not sooner then later, whether or not I had ever spoken myself. My silences had not protected me. Your silence will not protect you. But for every real word spoken, for every attempt I had ever made to speak those truths for which I am still seeking, I have made contact with other women while we examined the words to fit in a world in which we all believed, bridging our differences.

In Shock, the book

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I read Rana Awdish’s book In Shock quickly and greedily over the span of three days. In books I tend to mark up pages with passages I want to revisit.  Poor In Shock is completely dog-eared – pages turned inward every second or third page.  This is the sign of a good story.  In the grand tradition of physician writers Oliver Sacks and Paul Kalanithi, Rana Awdish has a rare talent for both science and writing.

It would be easy to describe this book as a medical memoir, but it is much more than that – it is a book of loss and grief over the death of a child. It champions quality improvement and compassionate care. In Shock is a love story too.

Dr. Awdish vividly recounts her time spent as a patient in the ICU with a sudden critical illness and contrasts it with her experience in the same ICU as a critical care physician.  This unfortunate coincidence allows for insights from both sides of the bed as both a patient and doctor.

I’m all about the feelings all the time, so I appreciated Dr. Awdish’s skill at recounting how it feels to be a patient.  She doesn’t white-wash the horrors inflicted in the hospital. She also offers practical advice to health professionals about using thoughtful communication techniques to avoid emotional harm.  She emphasizes how as a patient, she was much more than ‘abdominal pain and fetal demise.’   She reminds clinicians how much patients can hear from their beds, even in critical care.  I wince at her recollection of overhearing a doctor say in the ICU that ‘she’s trying to die on us.

The author serves up great insight into the makings of a physician and training programs that train compassion out of the most earnest of students.  I believe the hope for change lies in medical education (and all health professional education), but alas, the workings of that education mirrors the dysfunction of the health system.  The two are intertwined.  I can only hope that sharing patient stories from both health professionals and lay-patients will help.

This book reminded me why I was a failed student nurse – I could not figure out how to detach myself from patients.  Training to mold students into a ‘cooly distant authority’ happens in all health faculties, including nursing.  Dr. Awdish describes her experience as a medical student in the pediatric ICU:

“I found it utterly impossible to be detached or reserved in that unit.”  

Later, she was chastised by a supervising physician for expressing sadness for the death of a child, harshly learning, “…if we felt our feelings, we would kill the people we were supposed to help protect.”

My shock from In Shock was at the effort physicians make suppress to emotion, often at their own personal cost.  My best experiences with physicians have been those when doctors dared show they were human – not in a check-box way – but in an authentic, vulnerable way.  There are those rebels out there, but they are hard to find.  The training and health systems seem determined to squash them down.  I admire these kind champions even more now for swimming against the tide.

All is not lost and Rana does give us hope. She reminds us that there is “reciprocity in empathy.”  She shares positive experiences, too, including one with a Nurse Practitioner who demonstrates compassion for the death of her baby girl.  She explains how health professionals can “humbly witness suffering and offer support.”

Embedded in her harrowing story of experiencing a life-threatening event there is also an important love story about Rana’s relationship with her husband Randy.

“My bruised and discolored body was proof to him of what I had endured to stay with him,” she recounts.  I thought of my own husband and how both the author and I are graced with partners who granted us unconditional love during our health crises.  This deep, unwavering support can be healing too.

Dr. Rana Awdish’s In Shock covers a great amount of ground: shock at suddenly becoming gravely ill, losing her beloved baby girl and grieving for her previously healthy body.  There’s shock at how it feels to be a patient, shock at the resistance to her attempts to change the rigid medical culture to be more patient centred.

It is a dramatic and engaging read. I was spell bound until the very last page.  I might be predisposed to like this book as the mother of a son with a disability and now as a cancer patient. But this is a book for anybody who is a health professional or who has ever been – or might be – a patient (and that’s all of us).

I am heartened to have connected with Rana on Twitter and to discover she has a platform to preach for improved health communication as a speaker, writer and the Medical Director of Care Experience.  While it frustrates me that us simple layperson patients struggle to be heard, it does give me hope that doctors-as-patients are able to use their own stories to influence positive change.  Thank you Rana for gifting us your story.  I know it will make a difference in the world.

the tale of two appointments

gown

At least I have a gown

Yesterday I had two separate diagnostic imaging appointments.  One was for an ultrasound at the cancer agency and the other was for a follow-up mammogram at a diagnostic imaging centre.  I finished treatment for breast cancer six months ago. Both appointments involved my poor beleaguered breasts, but otherwise the two experiences could not have been more different.

I sat in my therapist’s office today and deconstructed each appointment.  I’m figuring out why I am so desperate for kindness in health care settings. A chunk of that is my own stuff – I seek comfort when I’m feeling vulnerable.  But no matter my own personal reasons – I hope we can all agree that being mean to people in hospitals and clinics is not an acceptable option in Canada in 2017.

I present these two experiences to demonstrate how easy it is to be kind, how it does not take more time and how kindness is up to individuals and lack of kindness cannot be blamed on the ‘system.’  Never forget the system is made up of people.  Even in a health care culture that does not promote kindness for its own staff, there is opportunity for exceptional folks to go against culture to demonstrate caring for those they’ve committed to serving.

Example 1:
The Ultrasound 
1.  I waited among the bank of chairs in the hall, the first appointment of the day.  A gentleman pushing a laundry cart called down the hall to me: ‘Hello there!’  This perked me up and made me smile – scared, anxious me, sitting alone in the cancer hospital for my first post-cancer treatment scan.  Hello there mattered.

2.  A man came out of the ultrasound room.  A man to do my breast ultrasound!  But he had a warm smile and called me by name.  Come and get changed, he said and I’ll meet you in the room.  Put the gown on with the back open, he added before he disappeared. I was greeted warmly and clearly told what to do.  I appreciated the option of the gown. (This will make sense as you read my other experience).

3.  I changed and went into the room.  The lights were darkened and there was soft classical music playing.  The environment was comforting.

4.  The whole ultrasound took about half an hour.  This nice man talked to me the whole time.  He asked about my cancer treatment in a conversational kind of way.  He told me what he was doing as he was doing it and also shared with me what he was doing next. Providing information about what was happening and what to expect next was a great comfort. 

5.  He said – this might hurt.  Tell me if you feel pain.  He also said, ‘I’m almost done’ as he was wrapping up.  He told me when he left the room and why.  He wasn’t afraid to acknowledge my pain.  

6.  I was still wound tight as a top, clearly worried that all my cancer wasn’t gone.  He said to me, ‘don’t be worried.’  I knew full well he wasn’t allowed to tell me anything about my scan.  The results of the ultrasound would be faxed to my oncologist in a week (alas, it is the holidays, so I won’t find out the results until the new year).  But his ‘don’t be worried’ – even if it wasn’t true, validated my concern and was actually sweet.  He lessened my anxiety with his words.

I walked out feeling okay.  It wasn’t what this man did – it was how he did it.  And none of it took more time.  And, surprisingly to me, it did not matter one bit that he was a male technologist because of his compassionate approach.

And then, one hour later, in sharp contrast, I experienced the cold, the officious, the not-so-kind experience.

Example 2:
The Mammogram 
1.  I had a mammogram earlier this month, but had been called back for another appointment.  I asked the booking clerk when she phoned, ‘why do I have to come back?’  She said she didn’t know.  So I spent sleepless nights thinking they found more cancer.  Not telling me why I had to come in again seems cruel.

2.  My husband, having dropped our son off at school, met me at this appointment.  We sat in one crowded waiting room until I was called into another waiting room.  On the door it said:  Women only.  No men were allowed.  My husband sat on a bench outside the elevator for the next hour.  Not permitting my partner to accompany me is not patient or family friendly.  

3.  I sat in the second waiting room for a long time.  I was hoping I wouldn’t get the same technologist as before, as she was unfriendly. (Irony alert:  having a woman technologist does not guarantee a good experience).  It turns out I got another woman, who was equally as unfriendly.  I knew then unfriendly was the culture of this diagnostic imaging centre, and only the most exceptional clinicians would rise above it.

Then there was this sign:

sign

I knew to expect it because I had been there before, so I was wise to them. I brought a cardigan to wear in the mammogram room.  At my last appointment, I had to strip from the waist up in front of the technologist and stood there, unnecessarily exposed, cold and topless.  This time I brought my own cover-up.

There’s so much to say about this sign.  First, the idea of being efficient by not encouraging gowns is baloney.  I sat in the waiting room for 40 minutes.  Forty minutes is plenty of time to change into a gown, isn’t it?  And for environmental impact?  Yes, I guess doing laundry is bad for the environment.  All my years of hating hospital gowns and I never would have guessed their solution to sterile gowns would be to take away the gown.  Yes, I could have taken a gown but this was clearly not encouraged.  There were other signs too, saying NO CELL PHONES.  There was a stereo on the floor, tuned into a Christmas music radio station that cut in and out as people walked past and played loud commercials.  The room was packed.  All of us women were lined up in rows in chairs, our fear palpable. Signage and physical space sets the tone for the whole patient experience.

4.  Once I was called in, I had to strip from the waist up.  I put my cardigan back on and pulled it tightly around me.  The woman did not introduce herself.  She did not tell me what she was going to do.  I said casually – it is too bad we don’t have gowns.  ‘Gowns just get in the way,’ she responded.  Oh.  Dignity starts with giving options to minimize patient nudity.  (Do I really have to say this?).

5.  I don’t want to discourage women from getting mammograms, but this mammogram hurt a lot.  She did tell me they wanted a closer picture of one part of my breast – which happened to be in an awkward position – close to under my arm.  I was jammed into the mammogram machine.  I whimpered as she tightened the machine around my breast – this one, my cancer side, still swollen with edema from radiation.  She did not acknowledge my pain and clamped down on it some more.  Not acknowledging pain does not help with suffering – in fact, it increases it.

6.  She must have taken ten more images.  Each time it hurt more.  I tried to breathe but I was told to hold my breath.  I was starting to feel dizzy and clammy.  I had no idea when she would be done.  Being left in the dark about what’s going on is anxiety-provoking in an already anxiety-provoking situation.

7.  Suddenly, it was mercifully over.  I stood in the corner, my back turned and got dressed. I was told to sit in the waiting room again, but I didn’t know why.  Another woman came about 20 minutes later and told me I could go.  I wasn’t informed what was to happen next or when my test results would be shared with me.  I got out of there as fast as I possibly could.  Knowing what will happen next does help.

I met my husband in the hall and he enveloped me in a hug.  What took so long?  Did they find something?  he asked, clearly alarmed.  I shook my head and said, just please take me home.

Listen, I don’t need emails or comments telling me I should have spoken up.  I know how to speak up.  I also know how to submit a complaint but I gotta tell you – a lot of good that’s done me in the past. Sometimes all we can do is put our head down and endure horrible situations.  I don’t always feel like being an advocate.  I am not always strong. That’s ok too.

But I hope I have demonstrated with these stories how one person can make a difference.  That the little things matter.  That what is not a big deal for health professionals (like topless patients) might be a big deal for us.

Those who work in health care can make a hard situation better by demonstrating compassion.  For my whole mammogram experience, all I can say is:  I know you can do better.

As Anne Lamott says, there are only two prayers:  Help me help me help me.  And thank you thank you thank you.  For the ultrasound technologist, I say thank you.  Thank you for making things a little bit easier for a scared, traumatized woman with breast cancer.  What you did mattered. In fact, all those so-called little things you did – that took no extra time at all – mattered to me a lot.  For you, I am tremendously grateful.  xo.