rethinking hospitals

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This is Part 2 of 2 about the overcrowded hospital situation in British Columbia.

So since my husband was stuck on a hospital stretcher in a hallway on a nursing unit when he was an inpatient last month, you’d think I’d be in favour of building more hospitals and hospital beds to solve the hallway health care problem, wouldn’t you?

At first glance, having more hospitals and inpatient beds seems like a good idea.  If there was even one extra bed at the hospital, maybe then my husband wouldn’t have to have been cared for in a hallway.  Alas, it isn’t as simple as this. I think building more hospitals with more beds is a misguided solution to this super complex problem.

It strikes me that hospitals have an input and output problem.  There are too many people coming in their doors and not enough people leaving.  This means patients are getting stacked up in hallways like piles of wood because people are not moving through the hospital as they should.  Things get really backed up, like a bad traffic jam or horrible constipation.

Let’s start with input.  People present to the Emergency Department with a problem.  The staff in the Emergency Department are under pressure to move people out of Emergency to alleviate build up of people in the waiting room.  So from Emergency, people are either discharged home or admitted to an inpatient unit.  The constipating problem: If there are no beds on the inpatient unit, people end up in the hallways instead until someone is discharged or moved somewhere else and a bed frees up.

I can almost hear you say: “Well people come to the Emergency Department when they shouldn’t for minor things.  That’s the problem.”  I must pause and say:  If people come to Emergency, they think they are having an emergency or they have no place else to go.  Full stop.  That’s why they are there.

The input problem is that patients do not have viable alternatives to the Emergency Department.  What other health care services is open 24 hours a day, 7 days a week?  Some people don’t even have family doctor – which is open Monday to Friday during banker’s hours anyhow – to care for them.  The Emergency Department becomes their health care.

I don’t know where I’m supposed to go if I’ve broken my leg, am in great pain and it is 8 pm on a Tuesday night.  My son once cut open his palm on a mountain bike ride.  The stuffing was coming out of his hand (ugh gory) and he clearly needed stitches.  I checked the local walk-in clinic’s website and they said they were accepting patients, so I sent him there.  The website was wrong; they were full and not accepting any patients and he got turned away.  He had no choice but to go to the community hospital’s Emergency Department, where he sat for five hours before he got his hand patched up with seven stitches.

There was no alternative place for him to go.  No urgent care, no after-hours clinic, no extended hours at a doctor’s office, no Nurse Practitioner’s clinic, no other walk-in clinic.  Only Emergency.  Believe me, the last place anybody wants to be is in an Emergency Department waiting room.  That’s like the seventh circle of hell.

Provide us with other options when we need non-urgent or urgent care.  (I’m not even sure what the difference is between urgent or non-urgent care. Me, along with the rest of the general public, would need education about where to go when).

While I’m at it, allow Nurse Practitioners and Pharmacists to practice to their fullest scope of practice so we don’t always have to go to a doctor. This would alleviate some backlog.  Give us other options with other professionals.  Right now when I’m sick, I have go to my family doctor (I’m lucky to have one who I can access) or go to Emergency.  Offering alternative professionals would help with the hospital’s input problem.

The output problem is this:  Sometimes an inpatient hospital bed is not the best place for a person to be.  Again, nobody wants to be in the hospital.   The food is terrible. There’s no privacy. It is loud and impossible to get a decent sleep.  But some folks are there because they can’t be discharged safely home.  Or they don’t have a home to go to.  Home care services are scarce, especially if you don’t have the insurance or money to supplement public home care with private services.  Family members aren’t always able to be caregivers.  If people need to be transferred to assisted living facilities for more care, there aren’t always enough spots in the public sector available there.  (And people can’t always afford the care in private facilities).

Fund public home care.  Support and fund family caregivers.  Provide more affordable and creative options for assisted living.

Look, I’m no health administrator who makes $400,000/year.  (I just made that number up).  I’m just a layperson patient who isn’t being paid by anybody.  But I can identify constipation when I see it.  There are too many people going into the hospital and not enough people going out.  Things aren’t moving through as they should.

Most importantly, we have to rethink the whole idea of a bricks and mortar hospital.  Yes, there will always be a need to have a place for people to go for surgery and intensive care. But there are a lot of services provided behind the hospital walls that could be reimagined.

For instance, why do hospitals demand that people go to them all the time?  Why not go out to where the people are instead?  Not every community would need a hospital built because the hospital could come to them.

This could be done by mobile services.  Outreach.  Satellite clinics.  Telehealth and other technology.  Home visits.  Coordination of appointments so patients don’t have to travel back and forth to the hospital all the time.  Navigators to help people find their way in a more streamlined fashion.

Why can’t acute care services that have been historically housed in the institution that is a hospital be delivered in the community in a different way?

You could look at individual communities and figure out what they need.  Lots of babies being born?  Then think birthing centres, instead of making women all drive to the Women’s Hospital in the city to give birth.  Are there lots of people with mental health issues?  Why aren’t there more publicly funded mental health services closer to home instead?

I think we jam a lot of services in traditional hospitals so the services will be publicly funded and fall under Medicare.  The Canada Health Act doesn’t demand we do this.  It is done this way because this is the way it has always been done.  It is time for this to change.

I know there are examples of pockets of these sort of innovations happening, but it is just not enough.  I don’t think we need more hospitals.  I think we need different places that deliver acute health care instead.

Hospitals are a relic of the olden times.  They are a status symbol for politicians, a throw back to the old days when a hospital was a reward for voting for a certain political party.  Constructing a new hospital and then just transferring all the same services into a new building is not an answer.

(Caveat:  I know there are hospitals crumbling into the ground, like St. Paul’s. There are times when hospitals need replacing  Also new space, with lots of light and healing spaces for patients and private rooms is wonderful for both staff and patient morale.  I do not deny this.  But more hospital beds equals more staff.  For the Lower Mainland, it is a hard sell to attract hospital staff because it costs so much to live here. Plus, academic institutions need to keep up their end of the bargain by educating more health professionals. Workforce planning is lagging here in British Columbia.  More beds has a ripple effect that needs to be carefully planned for).

But instead of simply photocopying the old services and putting them in a brand new building, perhaps this would be a good time to look at hospitals are being utilized and reimagine the whole damn health system.  Hospitals are based on a sickness model.  It is time that we broadened our definition of health, think about being truly patient-centred and reaching people where they are at – in their homes and their communities.  Building a billion dollar hospital is not a cost-effective solution to me.  If the input and output problems aren’t solved, there are just going to be patients stacked up again in the hallways of the shiny new hospital.  That won’t make for a very good photo op when the media comes around, will it?

And finally, since I’m on a roll here:  Patients might have good ideas too.  All sorts of patients, not just the privileged ones like me.  Patients have a lot of time to think while they are waiting in waiting rooms and hovering beside their loved ones on stretchers in the hallway.  Why not ask them?  Patients might just have the creative ideas needed for true system re-design.

After all, in Canada, patients are also the taxpayers who fund the health care system.  I think we’ve forgotten that.  As a funder, I demand better service for my money and a say in how my money is spent too.  Shoot for the moon folks.  Patients and the health care workforce are worth it.

 

 

 

 

 

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the saga of hallway health care

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(This is part 1 of 2 about British Columbia’s hospital overcrowding problem).

Last month, my husband was discharged after six days as an inpatient in the hospital.  I’ve been reflecting on that entire experience from my vantage point as the wife of a patient.  What has struck me was the difference in the culture of the two inpatient units he was on (which I wrote about here) and the fact that my husband spent ten hours on a stretcher in the corridor of a nursing unit as the recipient of hallway health care.

My husband was lucky.  Although he was very sick, he had something that was easily fixed with a procedure and went home a few days after he was admitted.  The problem of patients lined up on stretchers in the hallways?  There is no procedure to easily fix this problem.

My husband started his hospital experience in Emergency and was moved around a number of times there as he waited to be admitted to a bed on the nursing unit.  He texted me early in the morning to say:  ‘I got moved to the nursing unit’  I responded:  ‘What room?’  His text back: ‘I’m not in a room.  I’m in the hallway.’  What?

I’ve come to expect to see patients in the hallways in Emergency.  In fact, in some busy Vancouver emergencies, people are lying all over the floor in the waiting room.  But admitting a patient to the corridor on an inpatient unit?  This was news to me.

Sure enough, I arrived at the hospital that morning and there was my husband, lying on a stretcher in the middle of a crowded surgical nursing unit.  By some act of mercy, he was hidden from public view by privacy screens on wheels.  But the hallway was so narrow and so busy, every time another stretcher or large piece of equipment went by, I had to push the privacy screens to the side so they could get past. There was my sick husband, just lying there on a stretcher in the middle of the hallway, exposed to all the world.

I’ll pause here to say that he tells me he didn’t care about lying in the hallway because he was on heavy-duty pain medication.  In fact, he didn’t really care about much of anything at that point.  But I cared.  I cared because I love him and wanted to spare him at least a shred of dignity.

There was absolutely no privacy afforded in this whole hallway set-up.  There was no peace either – this was a hopping inpatient unit, noisy with staff, physicians, families and patients.

Worse, there were other patients lined up in the hallways, too, most of them elderly.  I was reminded of my own beloved grandparents and thought:  All these years on this earth and this is the treatment these older people get from our health care system?  This is so shameful.

Maybe even worse:  There was absolutely no extra room for the nurses to administer their care to patients who were in the hallway.  My husband’s nurse was apologetic about the situation and I felt for her. I’m sure she dealt with angry hallway patients all the time and that nurses were the ones who bore the brunt of patient frustration.  She also had no space in which to work.  I cannot believe for a second that hallway medicine does not have negative effects on patient safety.

And the worst thing of all?  Patients in the hallways of nursing units is now such a common practice that it has been normalized.  These patients are called ‘flow patients’ and there are numbers up on the wall to indicate where they should be parked.  My husband was Flow Patient #5.

Someone asked me:  Why didn’t you advocate for your husband and demand he get a bed in a room?  Well, that would mean that he would force someone out of their bed and into the hallway, wouldn’t it?  That wouldn’t be ok.  Instead, I politely inquired if there was a chance he would get moved to an actual room and I was told they were working on it.  This information settled me down and sure enough, about ten hours later, my husband was moved to a four bed room.

This hallway business was but a blip in his stay, but I still don’t think that this practice reflects well on our health care system. I think to myself:  Would a senior bureaucrat with the ministry of health be relegated to be a flow patient?  I have no evidence of VIP treatment in the Canadian health system – I think all Canadians would get the same equitable – yet shoddy – hallway treatment.  But if someone with influence and power was parked in a nursing unit hallway, I wonder if this practice would be allowed to continue.

Sometimes I think: Why aren’t all of us patients and their families marching in the streets?  And then I remember that patients and families are too sick and exhausted to march in the streets.  So the hallway health care continues.

Please remember that health care is an issue when it comes time to vote in our upcoming federal election.  This is not a uniquely Canadian situation and it happens in other countries too.  Telling the truth about experiences in health care in Canada will not take away our medicare. It will not turn us into an American system.  Nor will telling the truth about Canada  prevent Americans from adopting a more universal health system.

Is the answer to hallway medicine to build new hospitals with more beds?  You might be surprised but I think that more hospital beds is not the answer.  The answer is much more complicated than simply building a new hospital, which to me, is a really expensive bandaid that costs over a billion dollars.  

To be continued in Part 2…

 

 

 

How Patients Included is really about Inclusion

 

I stopped going to health conferences when I was diagnosed with cancer two years ago.  With this pause came perspective.  As a mom attending pediatric conferences, I often had to beg for compensation if I was a speaker.  Even if I was an attendee, I had to go through long, drawn-out negotiations with conference organizers and accounting departments to get my expenses covered.  Every single time I went to a conference there was a cost to me financially and personally.  There was a cost to my family too.

It started to feel like I was an add-on to the conference as a token patient just so they could self-accredit and say they were Patients Included.  With my pause in conference-attending, I now see that I didn’t just FEEL like a token patient, I WAS a token patient.  I now have the clarity to observe that conference organizers treat other patients and families shabbily too.  I would like this practice of shabby treatment to stop.

I was going for one of my regular walks recently and chatting on the phone with Isabel Jordan, who is the co-author of both this great article about compensation and the Patients Included movement.  We have had many conversations about partnering with patients.

My epiphany as I was crunching along a forest path was this:

The principles behind Patients Included at health conferences and the inclusion of disabled people are the same.

Inclusion is inclusion.  Take a look at the now-famous diagram of inclusion that I’ve posted above.  Let’s look at each of those circles under a health conference lens:

1.  Exclusion

For years, patients have been excluded from health conferences.  (This still occurs – even with Patient Engagement conferences.  If you can’t see the irony with that…).  For instance, at cancer conferences in Canada, the idea of inviting patients is still a brand new thing.  Most times we just don’t get invited.  Or one super-celebrity patient gets invited and nobody else. That, too, is exclusion.

2.  Segregation

Sometimes a group of chosen patients are invited to a conference.  There patients are ‘allowed’ to have their own sessions, separate from the rest of the conference.  This is better than exclusion, but it is still segregation.

3.  Integration

This where patients are ‘allowed’ to attend and ‘allowed’ to be in the same room as the other conference attendees.  I’ve been to those conferences – us patients often clump together at sessions and social events and not recognized by the other conference-goers.  Literally nobody saves us a spot at their table, so we sit at our own tables.  Most conferences are like this.  Patients are reluctantly invited and not embraced or accommodated to be full participants.

4.  Inclusion

This circle depicts inclusion.  This is something to aim for and illustrates the intention behind the whole Patients Included movement.  See all the coloured dots that aren’t green?  Those spots are all the patient attendees.  Here we are on conference planning committees, invited (and paid) as speakers and sitting at the big kids’ table with everybody else.  It is important to note that there can be exclusion even within this inclusion model.  That happens if the same patients are invited and attend conferences over and over again.  Within patient groups there can be exclusion too.

Hanging out, patiently waiting, on the other side of inclusion is belonging.

In talking about inclusion of kids with disabilities, Sara Pot – paraphrasing from John Swinton – says it best:

Inclusion = we’ll make room if you show up.
Belonging = you need to be here and you’re missed when you aren’t here.

Now apply this to health conferences.  You have to work your way through these circles and do inclusion right before you even get close to belonging.  Right now, many conferences struggle with even making room and helping patients show up.

Cynical me wonders if health conferences truly want patients at “their” conferences or if they see Patients Included as a tokenistic trend and a flavour of the month.  This would be a real shame and I think a grave misuse of the intention of the original Patients Included charter.

Optimistic me believes that authentic patient inclusion at health conferences can be done.  The key is that patient inclusion (and eventual belonging) will only happen if we do it all together.  If you are unsure if your conference is truly Patients Included – beyond accrediting yourselves and putting Patients Included on your website – you need to ask patients themselves.  Bonus points if you seek a diverse assortment of opinions and don’t just talk to your favourite patients.

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Note:  If you are interested in improving your health conference, I’d recommend you consult with patient partners early on in your planning.  They can help light the way. I do know patient partners who do this kind of work – send me an email and I can connect you up…

sue on the radio talking about cancer

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I had the opportunity to be a guest on two Voice of America Teen Wealth radio shows with host Brandi England. The first show went smoothly at the end of April. (Here is the first episode).

The second show was last night. The topic was cancer. Here it is if you have 54 minutes to spare.

It has been two years since I was diagnosed and I have not spoken out loud about cancer beyond a therapist’s room.  My immediate family don’t really enjoy being reminded of my cancer and friends rarely bring it up.  I’ve written a lot about cancer but never had a public conversation about how it feels to have cancer.

Nobody wants to talk about cancer. That’s a fact. This is because cancer is hard to talk about. I found that out last night. This second show was less smooth and there were more um’s and ah’s from me. I was much less polished than the first show, where I talked about being a mother and having a kid with a disability. Cancer is not that familiar to me. I’m still figuring out what has happened to me over the past two years and it showed in this radio conversation.

Why was it so hard for me to talk about cancer?  It is the relative new-ness of the topic for me. It is because it is hard to inject humour into the conversation and I like to use humour to connect with audiences.  I mean, with other people who have had cancer, we often laugh hysterically at the ridiculousness of it all.  But for the general public, laughing at cancer is taboo.  (Although at one point on the show, I shouted:  I DON’T NEED YOUR THOUGHTS AND PRAYERS).  I’m always aware that the people I’m talking to probably had a loved one with cancer and watch my words to make sure I’m respectful of that inevitability.  People have all sorts of whacky theories about cancer, too.  Cancer is a muddy minefield of a conversation topic.

In the end, here is some of what I said:
Cancer stopped me in my tracks. It was my great reckoning.
It’s actually pretty horrible telling people you have cancer.
Cancer really messes with your mind. It is lonely and isolating.
Pretending to be brave and strong is exhausting.

I also talked about the horrible task of telling your own children that you have cancer.

Afterwards, my husband said: you did a good job with a hard topic. I’ll take that. Instead of beating myself up, I’ve decided to practice self-kindness.  I do want to bring cancer out of the shadows and uncover its dark secrets. But it is tough. Today I have, as Brené Brown says, a vulnerability hangover.

The cancer part of my life is not wrapped up with a tidy pink bow. There is no happily ever after.  My story continues on, messy and undone. And if we are honest about it, life in general is messy and undone too. We are all but works in progress.

 

The Down Syndrome Rocks Talk, part 2

I thought the best way to share my son’s talk to a high school class about having Down syndrome was to simply share his presentation.  This talk was designed and written by Aaron himself.  The only adaptation we did was to provide copies of the speaking notes to the students, in case they had challenges understanding his speech.

I asked Aaron if he was okay with me posting his slides and his speech on my blog. He said yes.  (People with intellectual disabilities are capable of giving consent.  The problem is that we rarely ask their permission, or we don’t ask it in a way that is understood).

Enough with the mom commentary!  Here it is, standing strongly on its own.

Slide1

 

Hello, I am the only cool kid in at this school who has Down syndrome.  This is what I want you to know about Down syndrome.

Slide2

There are many kinds of disabilities in the world. Down syndrome is but one of them. I was born in 2003. When my mom and dad made me, I had Down syndrome.

I have three copies of the 21st chromosome. I have 47 chromosomes all together. You guys have 46! I have more chromosomes than you!

Slide3

 

How am I different?
My face looks different
I have low muscle tone
I need some help at school to learn

 

Slide4

I am the same as you too. How I rock: I like dabbing/flossing, Fortnite, Nerf guns, luxury cars and sports.

I also am an actor. I am not in Hollywood yet but I am signed with a talent agent. My social media is: YouTube
Instagram: @aaron.waddingham

Slide5

What I want you to know is that respect is the key. Respect means I want to be treated the same as you. I just need a bit of extra help.

Slide6

 

 

I am a human being like you.

 

Aaron delivered the presentation in a lively way, throwing in some jokes, demonstrating how he could bend his thumb back because of his low muscle tone and dabbing and flossing too.  Amusingly, when he said I have more chromosomes than you, he added BOOM!  IN YOUR FACE!

The students were very quiet.  The only time I spoke up during his talk was to say:  Aaron is a funny guy!  It is okay to laugh.  The permission to laugh with Aaron (instead of at him) seemed to help them relax.

I facilitated a question + answer session and there were thoughtful questions about stigma, independence, health concerns and the differences in education systems between provinces.  I felt a bit desperate to show them that we have a rich and full life (because we do), so I ended up rambling too much.  There are always lessons for me after every talk.

At the end, I made a request.  I said if they saw kids from the Access Program (the school district’s ‘special ed’ program) in the hall, not to be afraid to go up and say hi or give a fist bump or high five.  At least acknowledging people’s presence is a start on the long road to belonging.

I felt extremely proud of Aaron’s moxie.  He stood up and spoke for himself.  I was reminded how much he has to overcome to be a part of this world.  I admire him so much.  His ending comment:  I am a human being just like you – offers up with great clarity, everything you need to know about Down syndrome.

Did the talk make a difference?  I am not sure we will ever know for sure.  But if one person in that class is even just a little less afraid of a disabled person, then Aaron’s job was well done.

The Down Syndrome Rocks Talk, part 1

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This week, my son Aaron and I were invited to give a talk about Down syndrome to a class at his high school. We’ve co-presented once before, three years ago when Aaron was 13.

At that talk, Aaron read a one-page speech to a group of medical students. It was interesting to watch the students’ reactions to him. At first, when he stood up at the front of the room, they looked mortified. I asked them how many of them had disabled people in their lives. Only one of the medical students, out of 20, raised their hands. The concept of a disabled person giving a speech to them – in fact educating them – seemed new to most of them.

Once Aaron started reading his talk, I could see the look of surprise on their faces. Yes, some people with Down syndrome can read – not everybody can read and that’s okay – but some people can.  Note: you don’t need to read to give a talk, just the same as you don’t have to verbally talk to communicate.  But Aaron reads, so he read from his notes.

By the end of the session, a few of the students approached Aaron on the way out to give him a high five, or to comment on his hockey t-shirt. They made real effort to connect with him and for me it was heartening. It was a positive session. I hope they remember Aaron when they embark on their medical careers, and even the memory of him confidently standing in front of the room reading will dispel a stereotype or two that they might have had about people with intellectual disabilities.

Last week, when the teacher asked if I could come speak to the class and maybe bring Aaron, I flipped the request upside down. I asked Aaron if he wanted to speak to the class and if he maybe wanted to bring me.  I explained what the talk would probably be like and who would be in the audience.

‘Sure!’ he said. We were on.

I’ve been considering lately how I do too much for Aaron, instead of with Aaron. Or even better, how I should be giving Aaron the space to take the lead himself. As his mother, I think I have taken away a lot of his agency by making decisions for him. It is high time for me to give him control in his life back.  He would agree.  He often tells me:  “Mom I want my freedom.”

So I’ve included my lessons that I learned in the process of working with him to prepare his slides and speaking notes for the talk.

Lesson 1: It was his decision to speak.

Lesson 2: It was his talk, not mine.

It is always a good idea to ask organizers what they wanted for key messages for the audience. So I asked the teacher what she thought the students would like to know. She said: to dispel some of the myths about potential and abilities about Down syndrome, and to inform about some of the potential physical challenges. 

Aaron and I sat down to plan for this talk. ‘Do you want to use slides?’ Yes he said. We opened up PowerPoint and I handed over my computer. He picked his own template. ‘Do you want to type or should I?’ You do it Mom, he said.

Lesson 3: He chose his own template.

Lesson 4: I told him the key messages, but I did not tell him what to put on the slides. I only was the transcriber.

Lesson 5: He chose all his own images.

In the end he had six slides. I guided him with the topics that matched the organizer’s key messages. (This is what I would do if I was doing coaching for any speaker, something I do in my consulting business). He had an introduction slide, then talked about genetics, how he was different and how he rocked. The second last slide is the one that’s pictured above.

“What do you want the students to know about Down syndrome?” I asked. Respect, that’s the key he kept saying so it got its own slide.

For his final slide he wanted a picture of a black hole. He looked around Google images and he chose a picture of a black hole that was embedded inside Earth.

Then he dictated his speaking notes that matched up with his slides. I prompted him only by asking: What do you want to say when this slide is on the screen?

Lesson 6: The words on the speaking notes were his. I merely typed out what he said onto his speaking notes. I repeated his words back to him. Sometimes I suggested fixing some grammar, but otherwise I merely served as a copy-editor. The writer in me bit my tongue. I did not write or ghost-write his talk.

When we got to the last slide with the black hole, I asked what he wanted to say.

“I am a human being the same as you,” he said.

“That’s your final message?” I asked. Yes, he said firmly and definitively.

He then practiced reading his speaking notes. I emailed them to the teacher and asked her to provide copies to the students. People sometimes have a hard time understanding Aaron’s speech, especially if they haven’t developed an ear for him. The notes served as a tool to make his talk more accessible to the students. We adapt and modify where we can.

Aaron presented his talk on Wednesday. I’m waiting on the student feedback from the teacher. When I get the evaluations, I’ll write another piece about how his talk went. That’s for another blog post.

In the meantime, I learned a lot about taking my sticky hands off the steering wheel (as Anne Lamott says) and ‘allowing’ Aaron to create his own damn talk about his own damn self. These are new lessons for me.  I’m sure I did still have a sticky finger or two on the steering wheel and I will vow to improve next time.

I’ve been so wrapped up in my own identity of being the mom of a kid with a disability that I’ve forgotten that I don’t have a disability. Aaron’s Down syndrome is his, not mine. I may be an old dog, but this kid is continually teaching me new tricks.

to what end?

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Me in my glory days.  Photo credit: David Hungate

I have been slogging along as a family advocate and then as a patient in the health system for the past 16 years.  I’ve had paid positions at two different children’s hospitals where I was deeply committed to improving the family experience.  I even moved my family to another province for one of those jobs. I’ve logged countless hours as an unpaid volunteer on committees.  I’ve spoken at many national and international health conferences as an inspirational speaker.

Before that, in the 1990’s, I worked on projects for a provincial health department in funding, costing and information management.  In the 1980’s, I was a nursing student for two years before transferring into English, worked as a nursing attendant and went on to get a graduate certificate in health care administration.

I tell you all this not to prove my credibility, but to say that I’ve been around the block a few times.

All of me is tired.  Getting cancer two years ago tipped me over the edge.  Improving health care for patients and families has been my life’s work.  My ongoing experience in oncology has shown me that things have not improved for patients one little bit.  To what end have I dedicated myself to this work?  What difference have I made?

I’m not trolling for compliments.  I am truly wondering where the evidence is that my hundreds and hundreds hours of paid and unpaid patient engagement work has made any positive change.  There is no evidence in my recent clinical experience.  So why continue?

I started my advocacy work in pediatric health care after my son was born with Down syndrome.  I co-founded a community based peer support program, lobbied for a Down syndrome medical clinic and helped build a family council at a children’s hospital.  If you had asked me, I would have said that I was trying to make meaning of my son’s diagnosis.

Reflecting on this seemingly noble rationale, I recognize that this is actually rather insulting to my son.  What does this say about how I felt about the meaning of my son’s life?  Now I know that he has meaning by simply being human.  I don’t need to try to change the world to validate his worth and existence.

I would have also said that I did advocacy work to ‘make a difference.’  But other than a shot to my ego and some brief warm fuzzies for the audience, what difference did making myself vulnerable and standing behind a podium sharing my story (and even worse, sharing my son’s story) even make?  Show me the evidence.

This past week I had a trifecta of events.  I heard Andre Picard speak at City Conversations at SFU but his wonderful talk rattled me.  If I had been less worn down and brave enough, I would have stood up and asked:  What can us patients do to improve Canada’s health care system?  His clear and factual accounts of the myths of Medicare hit very close to home.

“As Canadians, we are all too accepting of mediocrity,” he said.  “Once in the health care system, you ask yourself – what the hell is wrong with the system?”  These true statements chilled me to the bone.

Then I had an unpleasant encounter with a new oncologist.  And then a terrible appointment letter showed up in the mail.  My never-ending shitty patient experience just goes on and on and on.

What the hell is wrong with the system?

All my talk about kindness, compassion and the patient voice has been for naught.  (Read Isabel Jordan’s reflections and Jennifer Johannesen’s critique of the whole patient engagement movement for food for thought).

The past two years I’ve slowly been withdrawing from the patient engagement world.  I no longer accept speaking engagements.  I don’t volunteer on committees or with projects.  I think: what’s the point?

I still rabble rouse on Twitter and Instagram and I write essays on this blog.  I’ve written a memoir and manifesto about health care called The Bird’s Eye View and I’m in the midst of editing it and shopping around for a publisher.  But writing is something in my realm, in my control.   My own self tries to treat myself with respect and kindness.  I no longer rely on health organizations to do that for me, because 93% of the time, I’m deeply disappointed.

I don’t want to deter you if you believe that patient engagement will change the health care world.  This has not been my experience but maybe it is yours.  But I must plead with you: Please don’t allow yourself to be taken advantage of.  Don’t let them ‘use’ your story.  Be particular when accepting opportunities.  Think, as I rarely did:  Why am I doing this?  What is the organization’s intention?  What is my own intention?

Zoom back 12 years and I was at a health conference with a team of family members and clinicians.  Something rotten happened there – we were there as a team, but a team decision was made and I wasn’t even consulted.  I mean, the details don’t matter – I have allowed this to happen to me a thousand times since then.

I left the conference room and went into the elevator to compose myself up in my room.  I was naive and hurt.  The pain of this made me weep.  I had thought I was a full partner and I clearly was there only as a token family representative.

The elevator doors opened and another woman walked in.   It was a mom who had volunteered with another Canadian children’s hospital for many years. I hastily wiped away my tears but I was still clearly upset.

“What’s wrong?” she said, gently hugging me.  “Come to my room and we will have a chat.”

I sat on her bed and cried, feeling betrayed and used by the clinicians.  She comforted me but then said firmly:

Don’t give ever them all of your heart.  Because if you do, they will chew you up and spit you out.  

I’ve given this same advice to patient and family advocates over the years, but have not heeded it myself.  I’ve allowed myself to be treated shittily by the system (and never ever forget that the system is made up of real live people) over the past dozen years.  Why have I done this?  I wanted to belong.  Attention massaged my fragile ego.  I had a need to be heard.  And yes, I wanted to make a difference.

No more.  I quit you health care.  Except for my minimized touches in a clinical setting – I have had cancer after all, which never really goes away – I’m done.

I’m breaking up with you patient engagement.  You’ve been a rotten partner. You don’t deserve me anyhow. It is finally time for me to take my own heart back.