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The Blog to Transform Advanced Care

Advancing Care through Innovation, Observation and Collaboration.

Feeling blue? How Shirley is starting a movement

Shirley Roberson has been living with Stage 4 cancer for many years. Some time ago, she had an appointment with her oncologist to go over some frustrating test results. On her way to his office she had one thing on her mind – what do these results mean for my future?  She had a million questions.

In came a young resident. He launched into a speech about her treatment plan, talking and talking and talking until Shirley looked at him and said –

“Stop.”

“What I want you to do is stop talking and go sit in that blue chair. While sitting in the blue chair you must not talk. You must listenI get to talk. Do you understand what I am asking you to do?”

He quickly nodded his head.

“Now what you should have done was ask me how I’m doing and what I want to discuss.”

Shirley had worked herself up in the re-telling, eyes big and hands held up next to her head in disbelief like she had just told a five year old to turn off his video game for the 145th time.

“I know some people who could use time in that blue chair,” someone responded.

We laughed. We laughed because the Blue Chair was not just Shirley’s experience but in some way applied to us all.

I haven’t been able to stop thinking about the Blue Chair since then.

This year, starting at the C-TAC Summit, we’d like to do something with a Blue Chair.

And I’d like to invite you to join us.


The power of the Blue Chair

We’ve all had Blue Chair moments in our lives, haven’t we?

You can imagine it now; that rough plastic texture, waiting for the door to open, for the doctor or nurse or social worker to come in and give you news that will change your life (or your family’s life).

You can imagine being the doctor, too, or the technician, looking at the person who is looking up at you, and wishing you have more power than you do. You can imagine being the administrative leader, too, trying to grapple with finances and costs and how to make sense in a sea of problems.

The truth is, we all feel helpless in the face of the blue chair. But I think Shirley may have pointed us to a way through. When Shirley asked that resident to take a seat, she invited him to break the cycle. And it’s inspired us to break the cycle too.


An experience in empathy and empowerment

When Shirley Roberson asked that resident to sit in the blue chair, what she was saying was simple. Don’t try to solve my problems right now. Just listen to me.

Whether we are clinicians or advocates or caregivers or family members, we can all get so busy rushing forward that we forget to listen.

The second thing Shirley was saying was: I have a role to play.  What we have to be ready to accept is that we’ve gotten it wrong, that our idea of helping someone with a serious illness, isn’t very helpful.  That stings, sure. And if you’re reading this you’re saying to yourself, no, I get it.  We must empower the patient and family to be part of their own care, their own healing process.

The trouble is we’re forgetful creatures.  That’s why I love the Blue Chair.  Like a radio filled with static, it realigns our antennae to the voice of the patient. It has the same unavoidable effect that someone hitting a giant gong in a crowded, squabbling business meeting, an exasperated teacher yelling CHILDREN PLEASE, or the quiet reminder that a religious icon around our necks might have. Are we focused on the right thing?

Our response to Shirley begs a nagging question: Is patient empowerment and listening really that rare that we’re still surprised when we find it?

Imagine if we reacted that way to clean water, air, car safety? You got to work today without getting hit? Amazing!

Having something as tangible, unavoidable, and unforgettable as a Blue Chair is a perfect reminder of something that should be equally unavoidable and unforgettable: the patient voice and respecting her agency in her own healing.

Those are Shirley’s words.  I’d be much more comfortable with empower people to make informed decisions about their care. When Shirley read that, though, she said, “Jon, are you ready for some blue chair time? Let me tell you about healing vs. curing…”.

Blue’s a special color because it keeps us guessing.  When we’re sad, we’re feeling blue. But when we’re optimistic, we say “blue skies ahead!” When we need to make a plan, we call it a blueprint. And when something unexpected happens, we say “that was out of the blue!”

Shirley – when you meet her – also keeps you guessing.  The best way to understand her?

Stop talking.  And take her – and other’s – invitation to take a seat.

But beyond that, Shirley and her blue chair are an invitation to transformation. And it’s a transformation that we would like to start, with your help, on October 9.

When Shirley asked me those questions — when she pushes me still today — then I start to think about things a little bit differently. I see new ideas and opportunities.

And while we’re on the subject of questions, here are a few Shirley would like us to think through to prepare for the Summit:

  1. Can you think of examples in your community about how stories like the Blue Chair can be used to reorient the health system to focus on the whole person and not just on someone’s disease?
  2. How can we co-design with patients programs to support their entire needs (psychological, spiritual and physical)?  Are there examples of this that you can share with us?
  3. As we’ve seen with the buzz around “social determinants of health”, we know that things like community, physical activity, laughter, art and creativity have an important role to play in improving health and wellbeing — no matter the stage of illness.  What can we do to integrate these resources into the standard of care for serious illness?  Again, are there examples you can share with us?

The Blue Chair has changed the way we look at our challenges and our opportunities. It has changed the way we think about the Summit.

This year, it’s going to be a little bit different. More personal. More challenging. More empathetic.

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1 Comment

  1. Avatar Ben Caswell on October 19, 2018 at 3:21 pm

    John, I love this post; thank you for the frame you provided.

    Like most of the participants, I was quite moved by Shirley and her story of advocating for herself with that physician.

    I took the challenge the Summit gave to heart. To combat ignorance of end-of-life issues, we must first develop empathy and empower the PATIENT in each of us. BJ Miller said it best in the Breakout Session on messaging: (paraphrased_):: “As soon as we put the THE in front of dying, we create a separation and forget our own humanity.”

    Perhaps the Blue Chair can also be the velvet throne for the patient in all of us… A place to acknowledge the still, small voice in each of us who is not afraid of death and dying, who in fact embraces it as a necessary and beautiful aspect of the Circle of Life. Listening to the chattering Voices in us that clamor to forestall and solve the problems and accepting What Is So with an open heart.

    In so doing, we can then hold the space and provide an open heart to those struggling and in fear.

    By remembering that this death thing is as real for doctor and nurse and janitor as it is for “the” patient.

    Shifting the conversation about how we die in today’s world begins with a reckoning: none of us gets out of here alive…

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