I Wrote A Book

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The Late Great Audre Lorde

This is the story of my book. Bird’s Eye View is a collection of stories of my life lived in health care – from a failed nursing student, to a health care bureaucrat, to the mom of a child with a disability to a patient and family engagement consultant to a woman living with breast cancer.  It is written for patients + families and anybody who works in health care – clinicians, staff, health faculty students and administrators.  It is for anybody who has an inkling that stories can change the world.

I started writing this book two and a half years ago after I left my job at a children’s hospital.  I was in deep grief when I resigned, but everybody said to me:  Now you can work on your book!  So that’s what I did for three whole months.  Then BAM I got diagnosed with breast cancer.  That was kind of a bummer and shut down the book action for a very long time.

During those dark hours, I barely managed to keep a journal, but I am thankful I did.  I called my journal Grace Period although I was hardly graceful.  I was what Arthur Frank calls in The Wounded Storyteller a narrative wreck.

I finished treatment and waited out my narrative wreck.  You may have read some of my narrative wreck pieces here on my blog. I was so neck-deep in crisis and grief that I couldn’t continue the book.  Plus, the book was about kindness and compassion in health care and to be honest, as a cancer patient, I wasn’t being treated with much kindness or compassion in health care.

I put the book aside and took poetry classes, regularly visited my therapist, tried meditation, did some paid consulting work and went for many long walks.

A year and a half after I was diagnosed I could finally bear to look at the book again.  Since some time had passed, I started writing more reflective chapters about having cancer. I added them to the words I had already written about being the mom of a kid with a disability.  The caregiver had became the patient and this was hard stuff for me to reconcile.

In January I finished a manuscript, all 100,000 words of it.  I started shopping around for a publisher and received a number of rejections.  This was not unexpected but it sure was disheartening.  Some of the rejections were plain mean.  One Toronto publisher said: I passed your manuscript around to our editors and there was no enthusiasm for it.  Ouch.

After every rejection, I paused to lick my wounds.  The Toronto-publisher route was clearly not working well for me.  Then I was introduced to Hambone Publishing in Australia.

I’ll leave the Hambone story for another time.  It is a beautiful tale of serendipity and connection. I will say they are a perfect fit for me.  The manuscript is with my editor now and she is doing the hard work of a structural edit. 100,000 words is too long. I’m very pleased that I found a fabulous illustrator – she is a local Vancouver artist – for the book’s cover.

I’m going to do this book my way.  I’m committed to the Patients Included principles for events.  I will bring other caregivers and patients along with me on this ride.

Bird’s Eye View will be released in the fall of 2019.  If you would like to follow along with my book adventures, fill out the form here to get on my mailing list.  You can also follow @birdseyeviewbook on Instagram.

I’m doing the thing I’m most afraid of, and I’m both scared and excited all at the same time.  xo.

 

getting back to basics

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I’ve been preaching about patient centred care for a long time.  The term patient centred care is not in vogue so much anymore. It has been replaced by the new phrases like patient experience, patient engagement and patient partnership.

Patient centred care is my old friend.  At its core, it is about how we treat each other as human beings.

As the Institute of Patient and Family Centered Care says: Patient centered care is grounded in mutually beneficial partnerships among patients, families, and health care professionals.

This definition applies whether partnerships are between reception staff and patients, clinicians and patients or organizations and patients.  The elements of patient centred care – respect, dignity, information sharing and collaboration apply no matter what term you use.

This weekend I had an opportunity to deliver a workshop on patient centred care to a packed room of health professionals.  It felt good to get back to basics.  I was particularly pleased that the organization recruited two patient speakers.  I worked with the speakers to support them for the event and then I moderated the patient panel.  The patients’ expenses were paid for and they were offered an honorarium.  This is best practice in including patients in conferences.

I only work with these types of organizations.  This type of respectful treatment of patients demonstrates to me that the organization values the patients’ time and wisdom.  This is patient centred care too.

Including patients in conferences?  Treat them with dignity and respect.  Share the information with them that they need.  Don’t do things to patients or for patients.  Work with patients.

I know this isn’t rocket science.  But everybody needs an occasional reminder about what matters to patients. We want to be treated like human beings.  Do unto others as you would have them unto you.

It is about bringing back the old-fashioned notion of bedside manners, whether one is actually at the bedside, or in the treatment room, or at the boardroom table, or at a health conference.  Courtesy matters.

Respect.  Dignity.  Information sharing.  Collaboration.  That’s what’s most important to me, no matter the setting, no matter the people involved.  These are the foundations of any trusting relationship.  With all our fancy lingo, I fear we’ve floated away what really matters – and that’s simply treating each with respect.

 

The Peanut Butter Falcon

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Actor Zach Gottasgen and Shia LaBeouf

This is not a movie review.  I’m not a movie reviewer.  You can read reviews here.  Instead, this is my account as the mom of a teenage boy and actor with Down syndrome of my take-aways after seeing the film The Peanut Butter Falcon.

The movie stars Zack Gottsagen, an actor with Down syndrome.  My #1 take-away from the movie was rather selfishly:  Maybe there will one day be a role for Aaron.  He has been signed with an excellent talent agent, but he has only had two auditions since March.  The fact is that his agent is working hard to get him auditions for teenage boy roles.  Casting directors and producers need to be open to Aaron attending casting calls for typical roles.  There aren’t that many Down syndrome roles out there – although he did try out for – but didn’t get – the role for the Down syndrome character on Stumptown.

I hope The Peanut Butter Falcon helps crack open film and television opportunities for my son and other disabled actors, who are working hard to hone their craft.

My #2 take-away was:  I need to stop babying Aaron.  He’s 16.  He often yells at me: I am independent!  I still hover and micro-manage him too much.  The problem is that I did this with my other two kids when they were teenagers.  I can’t tell how much I’m doing this because Aaron has Down syndrome and how much of it is the regular nagging of teenager children (to take out the garbage, wash their hair, go to bed, etc).  Maybe I should be a less naggy mom overall.  Hmmm.

There were two scenes in The Peanut Butter Falcon that stuck with me.  One was where Zak’s caregiver Eleanor was helping put on his t-shirt.  His new friend, Tyler, points out that Zak can put on his own shirt.  I’m Eleanor in that scene.

In another scene, Tyler tells Eleanor that even though she doesn’t use the ‘R’ word (I can’t even type it out – I trust you know what I mean), she still treats Zak as if he’s ‘R’.  That one stung and hit close to home.

As Anne Lamott says, I think I can take my sticky fingers off the steering wheel now.  Aaron can make his own way – if only I let him.

I felt so tender towards the actor in the film, recognizing the elements he has in common with my own son:  his body build, sloping shoulders, handsome face, the occasional stuttering when his brain is working faster than his mouth.  And the PARTY attitude.  Aaron has that too.

There were many elements of cruelty inflicted on Zak – first by being being abandoned by his family, institutionalized in a nursing home, being called the ‘R’ word.  It reminded me that cruelty is part of Aaron’s life too.  While I know of no overt bullying that has occurred at high school, I’m sure Aaron has suffered cruelties at school.  He was bullied in his early elementary years, by one boy in particular, so much so that we moved homes and switched schools.

The kids mostly ignore him at high school.  I think other teenagers simply don’t have time for him and lack an understanding of and patience for disabled people.  This saddens me.

The Peanut Butter Falcon had many reflections of real life – both the good and the bad – and I think that’s what makes a great movie. I can tell that writers Tyler Nilson and Michael Schwartz are friends with actor Zach Gottsagen.  This movie is deeply respectful of people who have Down syndrome.  I tip my hat to them all.

Finally, do I think Zach Gottsagen should get an Oscar nomination for his performance?  Hell ya, yes I do.

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.

 

 

 

 

 

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…

 

 

 

bird’s eye view book launch

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Me in Australia, 2011

I’m excited to announce that my book, Bird’s Eye View, will be launched at the Gathering of Kindness in Melbourne Australia in November 2019.

The Gathering of Kindness aims to bring together folks dedicated to building, nurturing and instilling a culture of kindness throughout the healthcare system.  It is a perfect place for me to launch my book.

I wrote a book of stories of my life lived in health care and many of those stories highlight kindnesses I have experienced as the mom of a son with a disability and as a cancer patient.  I firmly believe that positive staff engagement in their work is crucial to patient and family centred care.

Melbourne holds a special place in my heart, even if it is 13,000 kilometres away from my home in Vancouver Canada.

I wrote a piece about why Melbourne is so special to me two years ago for the Gathering of Kindness blog. It has to do with my relationship with Dr. Catherine Crock, who lives in Melbourne, is a physician at the Royal Children’s Hospital Melbourne and a proponent of the humanities in health care.  She’s also been a force behind my book, encouraging me the past few years to get this (damn) book written.

I have another story about Australia, one I’m reluctant to tell, as it contains a tinge of ‘first world problem’. But here goes: After I came back from Australia in 2011, I promised my husband and son that we would return one day together.  Snorkelling the Great Barrier Reef – before it disappears – has been on my husband’s bucket list forever.

We saved and saved and booked an epic trip to Australia for March 2017.  I was then diagnosed with breast cancer on February 6, 2017 and scheduled for surgery on February 20.  We had to cancel our entire trip. I even asked my breast surgeon – could I still go to Australia – and she laughed and shook her head, knowing better than I did what recover from surgery would be like and the challenges getting medical insurance during active cancer treatment.

I remember our son Aaron bursting into tears when we told him we couldn’t go on our greatly-anticipated trip.  It was so disappointing.  Stupid cancer.

This book launch at the Gathering of Kindness is a do-over for us.  This time I’m staying away from the doctor until after we get back (I’m only half-kidding).  I’m thankful for the opportunity to launch my book at this wonderful event.

Ps: If are you are interested in hosting a Bird’s Eye View launch at your hospital in your city, please be in touch at bird@birdcommunications.ca.  I’m available for Canadian and US travel and will be in the UK in March 2020.