patient stories

The View from 10,000 Feet

On her flight home from the Lown Conference last week, Mary Mack thought about Victor's essay questioning the mantra that healthcare should be more like air travel. It is a thing of beauty. Read the book and send us your musings.

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Dear Victor,

I recently heard you speak at the Lown Conference in DC and I bought your book, Why We Revolt.  I read it later that day. 

Your book is heartbreaking and beautiful and full of hope for the much needed change in the US health system. There were times, while reading your book, that I sobbed, for I have experienced both the cruelties and the transcendent kindnesses that you speak about. 

On my flight home, I was pondering your passenger/patient as a blur airline analogy;  in your book you write, "...my colleague brought up the pilot with an unexpected twist..."--  your colleague suggested that air travel would be a good template for, "quality improvement" and a, "new vision for healthcare!" Specifically, No need to know the pilot/doctor; no need to know the passenger/patient-- just streamlined efficiency. 

I had an aisle seat on the right, the very first row in coach, with the extra leg room;  just the divider was between first class and economy class. The curtain was open, so I had a perfect view and noticed all the elaborate attention given to the first class passengers. At times it seemed even over solicitous; one passenger said to the attendant respectfully, but with a bit of a sigh "don't worry, I'm absolutely fine." It was clear he just wanted to read and all the "intervention" was unnecessary (I realize there is no harm here, but still it fits). 

In the cramped spaces of coach, I noticed passengers trying to stow their luggage and move about in impossibly small spaces. Someone's bag got caught on another passenger's armrest. Someone dropped something. Someone was bigger than average. Someone in the way back of the plane found nowhere to stow their carry-on bag, and had to backtrack, jostling through the line - kind of panicked - hoping to find room, so they didn't have to check their bag. The airline attendant was displeased.  And someone was traveling with small children and was trying to work to correctly place a child's travel seat. The airline attendant cited the rules and regulations. The mom quickened her pace, trying to work with the seatbelt. A thin woman, yet her backside was blocking the aisle. 

The airline attendant became annoyed and judgmental, other passengers in line were becoming surly and grumbling, tired of the continued hold up. Cruel comments were made. 

It had become a negative and impossible environment inside that economy class section of the plane!  Passengers lacked compassion and understanding for one another, and the attendants blamed some passengers for the "unnecessary" hassles and delays. 

The passengers in coach are under cared for and the folks in first class are - from what I saw - overly cared for. 

Thank you for writing such a great book. I look forward to your next. 
All the best to you!
Mary Mack 

Visualizing Our Health History

“At the hospital, I kept getting asked the same question over and over again – our systems aren’t capturing information in a way that takes the burden off patients,” said Katie. “Our tech systems need to be considerate. The whole system and how it’s designed to help people work together; it needs to be considerate.”

Katie McCurdy is a user experience designer and researcher focusing on healthcare, drawing from her experiences as an autoimmune patient. “As a longtime patient and patient advocate, I have a deep understanding of the problems patients face, and through my personal experiences and past research and design projects, I have developed a strong sense of the obstacles providers are facing.”

Years ago, aiming to make sense of a set of strange autoimmune symptoms, Katie created a visual timeline of her experiences to help express herself during limited time with a new clinician. “You have such a loss of control and confusion and anxiety when things are happening with your body and no one can figure out why. That doctor visit, I realized that bringing my story in this very visual format helped me take control of the conversation; it helped me remember what I wanted to say and structure the conversation in a more coherent way. I used this [visual] format in a number of subsequent visits and it was a helpful way to tell my story and very helpful for the doctor as well."

She added, ”multiple doctors have told me ’that’s the coolest thing ever.’”

Since that time Katie has created Pictal, which is a set of worksheets that patients can use to create a health history timeline and show how symptoms look and feel on their body. "As a patient, I have extensively used timelines to efficiently talk about my own health history, and I have also used drawings on body shapes to show my symptoms. I decided to create worksheets that would help other patients could use to do the same." People can download the worksheets and use provided visuals, or create their own interpretations, to map the symptoms they are feeling.  

“It’s one thing for a doctor to hear someone tell them what’s wrong. Another thing to see exactly what they are feeling.”

"I have a vision of better collaboration and mutual understanding. Patients have so much information! And doctors want to know that information. The problem is that many patients don’t have the tools or time to tell their story efficiently and coherently.” Working within a system that often whittles patient/clinician interacts down to a single-digit number of minutes, the ability to streamline collaboration is more important than ever. Through this tool, patients of varying health literacy levels can share their experiences and symptoms, helping bring their clinicians up top speed quickly during a visit, ultimately leading to more productive discussions.

To learn more about Katie's work, you can visit her website, or follow her on Twitter @katiemccurdy. To download the Pictal worksheets, click here.  

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It is a leap of faith to accept another's truth

This story was shared as a response to Why We Revolt. If you've got a story to share about blur or greed or timelessness or love in healthcare, reach out

Image submitted by Paula, representative of the spirit of her story

Image submitted by Paula, representative of the spirit of her story

When my husband was nearing the end of his almost decade long push to stay alive as long as he could, given his terminal cancer diagnosis, he asked me to manage his care with nausea as the primary concern when I knew he was also in a lot of pain. 

His mind was not always clear at that point so I questioned him to make sure he meant what I heard him to say.  He confirmed his request and I did my best to quash the terrible nausea he suffered, before concerning myself with alleviating his pain. 

It was years later in my own cancer treatment I found out how debilitating non-stop nausea is and I understood.

We were in a long term fight to keep him alive.  During that time we perfected our ability to act as a team, with almost mechanical common drive, in all aspects of his healthcare.  We had also promised each other at the beginning of this journey, to be impeccably honest with each other.  

It is a leap of faith to listen to the patient's wish.

-Paula

I worry about being judged...

Fear of being judged is a strong motivator for not speaking up.  Sharing a story you are not confident will be well received requires making yourself vulnerable and potentially being challenging to someone in a position of power and from whom you are hoping for care and support. Let's start by acknowledging that this is really hard. And that it can be the most powerful way to puncture the cloud of assumptions that surrounds most patient-clinician interactions.

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Someone recently shared the following story through our interactive Plan Your Conversation tool. 


1. I want to talk about...
getting a wheelchair

2. It is important to me because...
I need to be able to get around better and do more things, and I think a
wheelchair will help me do that. For instance, I don't go to large medical
buildings, or events at my nieces' schools, because it's too far to walk.

3. It might help you to know...
that even though I appear to be doing ok at appointments, it's because I'm
sitting down and had some quiet space before you came in, there is not
extra noise in here to distract, I decreased how much I did in the days
previous to coming, and I will spend extra time in bed afterwards.

4. I want this conversation to lead to...
a recommendation for a wheelchair fitting.

5. I’m nervous this conversation will lead to...
being told that a wheelchair is not good for me because you are worried I
would do less. However, I think a wheelchair would help me be able to do
more.

A little bit of storytelling can make the assumptions so easy to see. The clinician may see wheelchairs as a mechanism for doing less but for the patient, they could be a way to do more. The version of the patient that sits in front of the clinician during a visit isn't the everyday patient. For those visits, the patient takes care to present their best self, making compromises in other parts of their day to make that happen.

I hope the person that submitted this is able to share this with their clinician and I hope it leads to a rich dialogue in which all the options and trade-offs are discussed. Maybe this person ends up with a wheelchair fitting and maybe they don't, but I can only imagine that a conversation in which this story is shared and truly heard would be one that reflects as least some aspects of careful and kind care. 

Our Barrier Cards explore the reasons why patients often don't share the things weighing on their minds or stories about their lives during their visits with their clinicians. Many of the tools and programs developed by The Patient Revolution are designed to help patients and caregivers find their way over these barriers. Do you have a story about a time when you felt judged or didn't share information with your clinician because you were worried about being judged? Tell us.