we are all in this together

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It is the lack of humanity that ails health care.  There is a lack of humanity for patients, families, staff, clinicians, physicians and administrators.  Every single person who touches health care, from the attendant in the parkade to the ICU patient, is suffering right now in health care settings because of a basic lack of humanity.  We are all in this mess together.

We are not being human to each other.  The way health care is constructed is not for humans.  It veered off course in the late 1980’s when some yahoo with power read some article about the efficiencies in Toyota car factories.  They decided that health care should be built around efficiencies, not people.  That was a big mistake.

Paying physicians on a fee for service model comes from that terrible philosophy.  Funding hospitals based on how sick patients are comes from that model.  This has translated into: Bring only one question to your doctor and you will have ten minutes maximum. Clinicians rushing from patient to patient.  And the sickest, most urgent patients get care, but everybody else can bloody well wait, no matter the harm it causes you.

If you work in health care or you are a patient or have a loved one who uses health care, I don’t have to explain this whole disaster to you.

It is time for a reset.  I am not going to preach about system-wide change.  The only change we can make is to change ourselves – in how we treat ourselves and how we treat other people.  That’s the kind of change I’m interested in.  Maybe if we all start doing that, then eventually we will push out the corporates, the bullies and the bean counters.  Then we can start hiring leaders who believe in the humanity of health care too.  That will be the tipping point.

I know that patients are suffering. I know that those who work in health care are suffering.  It strikes me that we are suffering for the same reason:  We do not feel seen.  We do not feel heard.  We feel left out.  We don’t have control of our own lives.  The processes set up in the car-factory-like health system are wearing us down.

Here is my bold call to action:  What if instead of comparing our suffering and blaming each other for our suffering, we band together?  I’m not talking about the cheerleading that hospital patient relations and foundation people want.  I’m talking about being real with each other.  It is a mistake to think this is only about staff morale and patient complaints.  Only by caring for each other will staff morale improve and patient complaints decrease.  Don’t wait for the system to do this for you because it never will.  Health care was not built for humans.

Patients can help people working in health care find meaning again in their work.  Read this article to see how.  Let us heal each other.

Over and over, I see a plea from patients asking for respect, dignity and inclusion in issues that matter greatly in their own lives.  I think health professionals crave the same respect, dignity and inclusion in issues that matter greatly in their lives too.

What if patients and professionals band together and commit to being more human with each other, one person at a time?  This would mean that health care folks would have to commit to letting down the guard of their professionalism.  Health care staff and physicians would to stop hiding behind their titles.

Let patients see you as a person.  I don’t want a perfect robot treating me or cleaning my hospital room.  I want a flawed, imperfect human being.  Chit chat with me. Put your hand on my shoulder,  Hug me.  Cry with me.  Tell me about your day. I want to see you and you want to be seen.  Say you don’t know.  (I know you can’t know everything).  Admit that you are sorry.  The system doesn’t care about you.  But I do.

I don’t know you care unless you show me you care.  More than anything when I was going through cancer treatment, I wanted to see my oncologist’s heart.  She never allowed me a peek in.  She had a constructed a tall, seemingly impenetrable wall around her heart and it was protected by the system-built lack of time she spent with me.  The combination of those two things made me feel invisible and miserable.  My oncologist seemed miserable too, trapped inside her well-dressed facade. She never smiled so neither did I.  I walked out of every appointment as demoralized as she seemed to be.  I felt her unhappiness.  I wanted to tell her – we are all in this together but she never gave me a chance.

I think we are all desperate for the same thing: dare I say, the word that medicine fears.  That word is love. Allowing love to seep into health care is what is going to save us all in the end.

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I’ve written an entire book about what ails and what heals in health care.  Bird’s Eye View will be released in November 2019.  It will be launched at the Gathering of Kindness in Australia events the week of November 11th.

Sign up here for pre-sale information!

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.