Updated: Sep 15, 2019
I remember reading stories in the Edmonton Journal about patients being stuck in Emergency for days and people being mistreated by the health care system.
But I didn't think it would ever happen to me. And to be honest, I didn't really believe what I read in the newspaper. It couldn't be that bad. Could it?
Well, I found out the hard way that sometimes it is that bad. And a lot of health care providers feel helpless to do anything about it.
But it doesn't have to be that way.
By working together, patients and providers can improve the health care system and create a culture that cares.
In his opening remarks at the 2017 Patient & Provider Care Summit, Dr. Curtis Johnston talks about the impact my patient experience had on him as a leader, "Barbara's willingness [to share her story] has impacted me in a very remarkable way. It has impacted our journey as a hospital."
He goes on to describe some of the changes they are making at the Royal Alexandra Hospital to improve the patient experience and presented me with an award for having the courage to show them the difference between care and caring.
I am grateful for the health care providers who saved my life and encouraged by Dr. Johnston's willingness to hear my story and use it as a catalyst for creating a culture that cares.
Below is a transcription of the video from Dr. Curtis Johnston's opening remarks at the 2017 Patient & Provider Summit and Barbara May's comments after receiving the Care & Caring Award.
[Dr. Curtis Johnston] - In 2011 a forty-six year old lady was admitted to our hospital almost dying from a pulmonary embolism.
Barbara had been sick for about three weeks of chronic bronchitis. And, uh, or not chronic. Acute bronchitis. And had been sicker and she'd been coughing up some blood and she'd been getting worse.
And one day when she was out in the backyard with her dog she collapsed into a lawn chair and passed out.
She had to drag herself into the house.
And for a moment, wondered if she should call the ambulance and then realized I could actually die.
And so she called the ambulance and the ambulance picked her up. And she lived out on St. Albert, but they weren't able to accommodate her so she came to our hospital here at the Royal Alec.
And in the emergency department she, she had a very timely access to diagnostic testing. She had a CAT scan done, showed a massive pulmonary embolism.
She was close to passing out a couple of times in the emergency department.
Hypo intensive, very shocky, very unwell.
She was going to die.
And she recalls the Emerg. Doc. Saying "You're going to die if we don't treat you."
She recalls that he also said "This drug we're gonna give you, that busts up the clots, could save your life, but it could also cause fatal bleeding in your brain."
There wasn't really much of a choice for her but she remembers that conversation.
She got the TPA, the thrombolytic that broke up the blood clot, and within minutes she started to feel better. Within minutes her breathing got better, her blood pressure improved, her oxygen levels got better.
And we can pause for a moment and say we've saved Barbara's life. What an amazing thing we could do as a health care system.
She spent a week in our hospital recovering from this near death experience, getting put on to the right treatments, investigations sorting out why she would get this blood clot.
She spent a week of being cared for in our hospital before being discharged home with follow-up.
We can look at that story and we can say we did a good job. The health care team, we made a diagnosis.
We offered a treatment that saved her life.
Cared for her for a week and she went home.
She's done well.
But, six months after that experience in hospital she wrote a letter.
That letter eventually made its way to my desk.
And at the time I was the Chief of Medicine here at the hospital, and I got this letter.
I read this letter and it was heartbreaking. Because, although we had done the right things and cared for Barbara, her experience of care was not good. Her experience of care was horrible.
There are many things that happened that just were not good about her care.
Things like after she got the thrombolytic, she's lying in a stretcher in the emergency department, and she's bleeding.
She'd just been given thrombolytic, she was on anticoagulants, and she started bleeding, she was menstruating at the time and she was bleeding and she just wanted to get cleaned up and when she asked for help, "Someone, help me clean up," she describes, like, she literally, being thrown wipes and pads and told go clean yourself up.
A short time later, she had to get up and go to the bathroom, her catheter had been removed and she had to go to the bathroom, and she asked for help to go to the bathroom, and they said "Well, the bathroom's just across the hall. Go ahead. Go over there."
She felt weak and unsteady but told to go over there. "Well, what about the oxygen that I'm on?" "Just take it off, go to the bathroom, "come back, we'll put your oxygen back on."
When she got back to her bed, her oxygen saturation was seventy percent.
She was not feeling good.
When she was up on the ward, she was looked after by multiple, different physicians, sometimes there was a lack of clarity of who was who coming in the room.
What's your job?
What's your role?
What's your name?
Looked after by multiple, different physicians.
Sometimes, not seeing a doctor for more than three days.
Having questions, not being able to answer them.
Having anxiety and worry in the middle of the night, but no one to talk to.
She was in nine beds over the course of eight days at that same hospital.
The day before she was to be discharged, she was told she needed to go to a stretcher.
You need to go to one of our over-capacity spaces, which are stretchers, an extra stretcher crammed into an already-crammed, four bedroom.
She hadn't slept well for those, week before, she's sleep deprived, she admits it, she was angry, and she recalls holding onto those bedrails and talking to that nurse, that poor nurse who was just doing her job, coming in saying "I'm sorry, but we have to move you to a stretcher" but talking to her and saying "I am not moving out of this bed."
And that poor nurse backed away, did the right thing, and said okay, we'll find another way.
By the time it came to getting out of the hospital, Barbara couldn't wait. Couldn't wait to get out of our hospitals.
And that story of Barbara's impacted me tremendously.
And a couple months later, I invited Barbara back and I invited her to come and talk to a group of about twenty staff.
We met in, actually, one of the rooms just around the corner, here.
When we met, we heard Barbara's story, and I can tell you that there wasn't a dry eye in that room.
Because we never intended that to be her experience.
But it was and we had to wrestle with that truth.
We had to stop for a moment, in that uncomfortable pain, and wrestle with the truth that that was her experience whether we intended it or not.
And that started a conversation and that conversation has led to this summit today.
That conversation led to other conversations that said, you know, there's a difference between care, just the, making the diagnosis and providing the right medications, and caring. Doing it with compassion and empathy and doing it in a way that's meaningful to patients.
That conversation was a tipping point for us in this hospital. We produced a video called "Care and Caring" video which many of you have seen.
We've created an office so that patient and provider experience, with Marilyn, is the head of.
We've created Family Presence where we acknowledge that families are part of the circle of care and we need them to be part of the circle of care and journey with our patients through their whole hospital stay.
We've reflected on the fact that we're an inner city hospital and that we should take pride in being an inner city hospital and what does that mean to look after some of the most socially disadvantaged people in the world? And how do we do that with meaning and pride and an extraordinary measure of empathy and compassion?
And that's led to this summit.
And now we're working on what we call the Royal Alec way.
All of you will have a copy of our Royal Alec way in your packages and the Royal Alec way is our way of being intentional about the culture we're trying to create at our hospitals.
No hospital has ever changed the culture of their institution being one that is a great place to work and where patients want to come and receive care without actually being very explicit and intentional and saying, "This is how we want you to act when you come to work."
And the Royal Alec way is about our culture and about changing the culture of the organization and the institution and there's three parts to it.
The first part of it is welcoming.
The second is appreciation.
And the third is ownership.
And we're very intentional about why we chose those three things. And we made them habits. We describe them as essential habits.
In other words, these are things that we should have to do each and every day, without fail, and if all of us do this, we will change the culture of our institution.
And I can tell you something, it takes ten times more courage maybe more for someone to come up who's had a negative experience and talk to us.
For someone to write that letter and to say "My experience was really bad in your hospital, "and I'm actually willing to talk about it," the amount of courage it takes to do that I can't measure, I don't know, it's enormous courage to do that.
To take that time to not only write that letter but when it gets raw, when it hurts, and when you have symptoms of post-traumatic stress disorder, and yet you're willing to do that and you're willing to actually come and meet with a group of twenty healthcare professionals and tell them your story, that takes tremendous courage.
And I can tell you that that Barbara's willingness to do that has impacted me in a very remarkable way. It's impacted our journey as a hospital.
And I want to invite Lisa to come up.
Lisa was one of our nurses. She's one of our managers in our emergency department. She's one of the nurses that was in that room when we met and talked.
And I want to invite Judith to come up as well as our leader who always tells us what to do right.
And is always right.
And I want to invite both of them to come up because this is a really special day for me.
This is a special day for me to acknowledge one of my heroes.
For me to acknowledge Barbara, who had the courage to come and tell her story and is here with us today.
So, please welcome Barbara May.
This says thank you.
Barbara May, thank you for having the courage to show us the difference between care and caring.
Barbara's asked to say a couple of words. Let's listen to what she has to say.
[Barbara May] - Doctor Johnston, what you said about me being here today, I think that's the most important thing is that I am here today.
I'm alive because of people like you.
Because of the work that you do here at the hospital.
There was no doubt in my mind that I was going to die that night. I knew it. My whole being knew it.
I could not get oxygen into my body.
And when I was lying on the table and the doctor told me I had the blood clots in my lungs and stuck in my heart and was going to die, my voice in my head was screaming, "I don't want to die. I'm not done being a mom and I want to be a grandma."
I survived, but as Doctor Johnston mentioned I didn't have a very good experience here.
But I did have a few wonderful moments here and I am so grateful that you are all working to improve the culture, to make change to the patient experience.
And I'd like to share that, one of the positive experiences I had, which was the night after I had almost died and I was stuck in emergency because there were no beds.
And a nurse came back to see me, and she came in and she walked into my room and she stopped at the foot of the bed, and she looked at me, she went, "Wow. You look like a different person."
And then she walked up and she sat down beside me and she held my hand and she said, "When you turned blue on us, "I thought we were going to lose you."
And we cried together. And it was one of the most meaningful and beautiful things anyone has ever done because you validated my experience.
It was like, yes, I was there with you.
This was real.
This really happened.
When I met Doctor Johnston, it took me six months to write that letter. Like, six months, because every time I tried I would break down in tears.
And when I met Doctor Johnston, in this little, tiny closet of an audience, (laughing) I hope they got you a better office now.
So small. I was like, wow. I know we're out of space here, but he needs a bigger office.
And we sat there, and I must've went on for forty-five minutes about my experience.
Like, I remembered, like, every detail.
And I looked at him and he was, he was kind of shaky.
And he looked at me, he goes, "You had a horrible patient experience."
And, like, I can't even describe how amazing that was that he just said that.
Like, he acknowledged the truth of what had happened to me.
And for the six months up to that when I would try to say, "Hey, it wasn't very good," people would just be like "Oh, it couldn't have been that bad. "Like what do you mean you were stuck in emergency for two and a half days? That couldn't have happened."
But it did.
And when Doctor Johnston listened to my story and asked me if I would be willing to come and speak to the team here at the Royal Alec I thought, yes. Of course.
Because, there are so many patients that don't have the skills, or the training, or the ability to speak up for themselves.
And I felt it was really important because I am a speaker.
I do have the training to be able to express myself.
As hard as it was, and I think I cried through most of the talk, I did it because I wanted the patient experience to be better here.
And I am thrilled to hear that you're putting the caring back into care.
Thank you all.