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.
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.
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.
Note: this essay is based on my talk at The Wonder Years Workshop at the Edmonton Down Syndrome Society on February 25, 2018. It was a true honour to speak to this group of new families who have babies with Down syndrome.
My youngest son is now almost 15 years old. The trajectory of our entire family’s lives changed when his doctor uttered the words ‘Down syndrome.’ I’ll never forget that moment – I can remember every detail – how the room smelled and even the shoes my doctor was wearing.
Aaron’s diagnosis was a significant time for me, bordering on the traumatic. The baby we expected was not the baby we got. I irrationally blamed myself, thinking I was too old and I had grown up too close to the refineries – irrational thoughts when I was neck-deep in grief.
As the years have passed, the intense grief has faded as I’ve realized that there is loss associated with parenting all children. No child is perfect and all children are hard work. But with typically developing children, we learn this lesson gradually as they grow up. With our kids with Down syndrome, we are told this immediately upon diagnosis. For me, it felt as if I had been hit by a truck.
We must honour the healing that comes from the dark times. For many months, I felt like I had a suffocating blanket thrown over my head. I was mourning the loss of the so-called perfect baby. I had to grieve for the baby I thought I was going to have in order to accept the baby I got. My baby boy did not allow me to stay stuck in the grief. Looking back, there were many factors that helped me move forward to see the light again. I want to share my story of gradually appreciating the wonder that is our son.
Coming to The Wonder Years is an important step to start building your own community. Finding other moms who had babies with Down syndrome saved me. Fifteen years ago, there were no moms groups, no EDSS office space – but us four moms with our tiny, flexible babies with almond eyes – found each other. We would get together every month at each other’s houses with our wee ones. Helga, Veronica and Karen were my saving grace. They knew what it was like to have an unexpected child with Down syndrome and we could talk to each other freely and without judgment.
Today Aaron is friends with these (now) teenagers, who he first met when he was 5 months old. He and Helga’s son Vincent spend a glorious weekend each summer on their family boat in the Okanagan – endlessly jumping off into the lake, tubing and engaging in rowdy burping contests. Aaron and Veronica’s son Andrew Face Time each other regularly – I can hear the two of them roaring with laughter on the iPad in Aaron’s room. These friendships in my new community began by helping me, a lonely sad mom – but have evolved into deeper relationships for our entire family, including our son with Down syndrome. Aaron needed to find his own people too. However you find your peeps – through in-person connections, via social media – it doesn’t matter. When you are ready, reach out. You will need each other throughout the years.
My personality is good for people – for love – like my family. –Aaron, age 15
Having Aaron in our lives has changed our entire family. He has infused all of us with wonder. He has two older siblings who were 6 and 9 when he was first born. His sister Ella, now 21 and in third year nursing school, reflected back on how Aaron has made a difference in her life:
Aaron has taught me to be more patient and more inclusive, accepting and nonjudgmental at an earlier age than most of my peers. Honestly, it is cheesy to say but he truly is a bright light in this world. He’s kind, smart and HILARIOUS and he changes the lives and opinions of everyone who takes the time to get to know him. He’s why I wanted to be a nurse – not to cure sick people, but to see the spark that is so often ignored in vulnerable populations.
Aaron’s older brother shares similar sentiments, adding that Aaron has greatly strengthened his compassion. And my husband, Aaron’s dad, emphasizes that Aaron has challenged him in ways he didn’t expect, but also warns not to underestimate your child’s ability to learn or enjoy the things you enjoy. (For example, Aaron loves swimming competitively, watching Oilers’ hockey and eating hamburgers just like his dad). The majority of our children’s genes come from their mom and dad – it is only the one chromosome that is extra. Don’t forget that our kids are more like us than they are like Down syndrome.
My friend KC offers up this wisdom: throw out the milestone charts and celebrate every hard-won achievement. Only surround yourself with family and friends who love and support you and your child, she says. Make connections with other families within your new community and keep them close. And be flexible in the direction you choose – there are lots of decisions about therapy, preschool, recreation that will need to be made. You will make the best decision at the time and it is okay if that choice doesn’t stay the same. As your child grows and changes, you will too. This constant recalibration is hard for those of us who want control and a crystal ball in life. I’ll add: listen to your heart; it will always tell you what to do.
Speaking of hearts, please remember to be kind to yourself in this new life. Find yourself safe spaces where you can feel all your feelings. You don’t have to be strong all the time. Do more of what nourishes you. Often we search for meaning once we’ve had a child with Down syndrome – we do this through our necessary advocacy work to make the world a better place for those with differences. This is important work, but also remember to take time for yourself, your partner and your kids too. Changing the world is exhausting so it is crucial to take breaks and allow others to take their turn to change the world too. It is hard to be vulnerable and ask for help, but that’s what I’ve had to do.
As Natalie Merchant says in her song Wonder:
I believe, fate, fate smiled
Destiny laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child with be gifted
With love, with patience, and with faith
She’ll make her way.
You and your child can – and will – live a good and rich life. Have love, patience and faith (whatever faith means to you) and listen closely to your child with Down syndrome. You and your baby are valued, worthy and loved. I promise that your child, above all else, will be the one to help you find your way.
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.
(A prompt from my writing class: describe a moment you are at peace)
For twenty days in between appointments, I walked. I walked in concentric circles around the hospital – down to False Creek, up the Cambie hill, west to the fancy shops and east to the hipsters with their big beards.
For twenty days, I looked for a picture. In the hospital, all my photos were taken in black and white. But outside out on my stroll, I searched for colour.
I snapped a tabby cat sunning on a step, the city view peeking through the condos and a bicycle parked against a tree, its basket filled with flowers. Once a crow flew at me on 10th street, angered I had passed too close to its babies. I continued on. There was a coffee shop filled with books, a burgundy mosaic pattern on a store floor and the blossoms slowly filling the tree canopies with early spring.
On my last day of those long 20 days of treatment, I spotted some graffiti on an alley wall. It was a perfect pink circle with stencilled words that simply said – you are here. And that is enough. xo.