Patient Stories: At the Heart of Patient Experience

Organizations around the world are using storytelling to connect with varying audiences. In healthcare settings, patient and caregiver stories can be used for education, quality improvement, inspiration and more. Stories can help staff to understand what it’s like to be a patient or caregiver – all of the variables that make an experience good or bad. Once we understand these variables we can work on improving experiences which can lead to better outcomes for everyone.

It’s Patient Experience Week and in honor of that we’d like to share a story from a CEAN member which can show us what the experience is like when an emergency medical situation occurs.  

Not the Day I Planned

By Karen S.

My plan for the day was HomeSense and White Spot with my friend. I felt a little ‘off’ so when I arrived to pick her up, I told her I needed a glass of water and to sit for a minute. I began to feel worse, clammy, nauseous and I knew definitively I needed to go to the hospital. I have had occasions previously where I thought I should go to hospital, talked myself out of it and went to bed instead. This time was different, there was NO question, I needed to go to hospital.

When I walked into ER, I was asked for my care card and I said, “I’m having a Heart Attack!” I sat at a Triage station and was asked for my personal info. Again I said “I’m having a Heart Attack!” The nurse at the other station said, “Take her back” and I walked through the doors, lied down, the tech put on the ECG leads, turned on the machine and immediately called a code.

Instantly there were many people around me. My eyes were closed but several different people talked in my ear. The Doc was on the phone to a Heart Catheterization Lab and directing someone to call for a transport by ambulance. In a lovely calm, jokey voice, a nurse asked ‘Was it my favourite bra?” because they were going to cut it off. It was so normal and comforting it took me momentarily out of the chaos. I appreciated that. Someone else started filling out a MOST (Medical Orders for Scope of Treatment) which I was familiar with and to my surprise, I interrupted her and stated very forcefully “I WANT EVERYTHING!!” –  and I did. Save My Life Please.

I was loaded into the ambulance wearing defibrillator pads and accompanied by a nurse with the power pack in a backpack. When we arrived, my son was waiting by the door and seeing him made everything real again. Pretty much everything from ‘favourite bra’ to my son’s face was extremely surreal! The attendants ran through the hall to the Cath Lab, 2 Doctors and a nurse were waiting and the procedure began. I was sedated with closed eyes but could hear everything. One doctor’s voice was monotone and calm..”400 units heparin, inflate, deflate”. He said these words over and over. Then a female voice said “More heparin?? – I’ve never seen you use so much heparin.” This was alarming – very alarming, likely aggravated by the fact that I couldn’t move or react. I felt overwhelming helplessness along with fear. If her voice had been more businesslike, or she hadn’t used “I’ve never seen” I would not have been alarmed.

I was monitored after the stenting and when stable, transported back to the originating hospital still accompanied by my nurse with her backpack. I spent 2 days in hospital, then had an informative visit from the discharge nurse (who phoned 2 weeks later to see how I was doing… impressive) and I was home.

Home and afraid…waiting for the ‘other shoe to drop’…When would it happen again? I went to bed with fear and I woke up with fear. I went to the ER 2 times with chest pain. I finally figured out I was using too much nitro and that was causing low blood pressure that was causing chest pain. Living in fear is no way to live a life. After spending a night in the ER because the attending would not discharge me until she had some answers as to what was going on, I waited all day for them to squeeze me in for a MIBI. After being on the treadmill until my HR was 130 and not dropping dead, I made a conscious decision to stop living in fear. Then the results came back: Normal Blood Flow.

Am I never afraid? No. Sometimes I still am. When I drive the Coquihalla to visit my granddaughter, do I have second thoughts? Maybe, but I’ve explained to my daughter that this is how I choose to live my life. If something were to happen, she could not feel guilty…it’s my choice.

Oh, one other thing. The MOST form was on my chart throughout my episode. Full Code. However, if something had gone sideways for me, would I have wanted to be in ICU on a ventilator? Absolutely not! ….but I have an Advance Care Plan (ACP). It states: if after 5 days ( It used to be 72 hrs but I’ve always been a slow starter) the prognosis is poor, I wish to be taken off life support, given comfort care and allowed a natural death.

So you see, I was able to give instructions (MOST) in a medical crisis: Do everything you can to save me, knowing if the outcome was not what I had intended, I had a way out (ACP) that my children would honour if necessary.

Of all the things I’ve learned through this experience, if there was only one thing I would want everyone to know, it would be this:

A medical crisis is NOT the time to start thinking about what matters most to you, what you want and what you don’t want. In a medical crisis, you are small, vulnerable and very very afraid. All you can do is react to what’s happening to you, it’s not the time for decision making.

Do your work in advance. Know what you want. Know who will speak for you if you are unable to speak for yourself. Know you have taken the time to make sure they know what matters most to you.

We would like to thank Karen for sharing her story and experience.

Do you have a story to share, that can teach others about what made your patient experience a good or bad one? Please visit our Patient & Caregiver Stories page to find out how you can share your story.

Do you want to know more about Advance Care Planning? In her story, Karen mentions the importance of having a plan for your future healthcare and having someone who can speak for you and your wishes. Click here to find out more about ACP.

Comments

Thanks to Karen for telling her story in such an eloquent and thoughtful way. We could feel her fear, almost taste it! So important for individuals to hear so that they can take the time to reflect and have the discussions on the health care they want and don’t want. The feedback to staff will also be very helpful. So easy to forget that hearing is the last sense to go and a comment made when we cannot respond can be devastating to a patient. I am also glad to hear that Karen is doing well and back on the road again! Kudos and best regards to Karen!

Comment by Barbara Greenlaw on April 29, 2020.

Thanks for the comment Barbara! Hope you are well.

Comment by syamamoto on April 29, 2020.

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