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Wednesday, January 31, 2018

Innovation and Design at End of Life: Tea with Ivor Williams

by Lizzy Miles

The day before the inaugural Endwell Conference in San Francisco, I had the opportunity to sit down for tea with Ivor Williams. Ivor’s Endwell biography listed in the program is what caught my attention.

Ivor is Senior Design Associate at the Helix Centre, based in St Mary’s Hospital in London; founder of the research and consultancy group Being and Dying; and co-founder of Humane Engineering, designing digital products that explore the use of technology for health and social good.

Ivor’s focus at the Helix Centre is on innovation at end of life. I really didn't know what that meant, but I wanted to learn more from Ivor. In hindsight, I wish I would have audio recorded our conversation because his way of expressing himself is so thoughtful and profound. I even found myself forgetting to take notes or finish my sentences on the notes that I did take.

Fortunately I wrote down my takeaways from our conversation. These are not necessarily direct quotes, but themes and ideas that came through.

Doctors aren’t experts. As a society we have to move away from the idea that medicine provides certainty.
and yet…
In the U.K., a patient cannot demand treatment.

Death is about power and control. I brought up the conditions in the U.S. where it seems to be that there are a wide variety of views and strong opinions related to end of life. There is the advocacy for euthanasia and then a contingent of people who insist you should have the right to pursue treatment, even against doctor recommendations. Ivor reminded me that America was founded by a variety of cultures and therefore it shouldn’t really be a surprise that we have all these varied points of views.

We need to find a way to be compassionate towards those who fear death. This thought hit home for me because sometimes I forget what it’s like to be thinking about death for the first time. As a hospice social worker who hosts Death Cafes in my spare time, I think about death and dying every day. Most of our patients and family members don’t. What does this mean for how I (we) interact with our patients and families? While there is some information that is common sense to us, how do we communicate that information to those we serve? I want to start reminding myself before every interaction to be mindful of my approach.

Innovation doesn't have to be complex. One of Ivor’s cool projects was a redesigned CPR form in the U.K. to require a conversation between physician and patient/family. I imagine this was quite a process to implement. However Ivor gave me a lovely example of how design and innovation can be simple.

Ivor told me about a hospice that had a room in which physicians would take families to deliver what inevitably would be bad news. As per custom in the U.K, tea was served. However, for convenience sake, the tea was served in plastic cups. It was a cleaning person who noticed the symbolism and raised it as a concern.

“Nothing feels more transient, more impermanent than tea in a plastic cup," Ivor noted.

The hospice listened to employee and switched to using a real teacup for the family conversations. Ivor said the impact was noticeable.

Recognition and ritual matter. Ivor gave another example of a seemingly small detail that could feel symbolic. When a patient dies in an inpatient unit and the family isn’t there, how do you package their belongings? Ivor told of a hospice that got really nice fabric bags for the clothing to give the situation the respect that it is due. Certainly it would cost more, but as soon as I heard of this, I felt in my heart that it would make a positive impact for most families.

Take a breath. Ivor said, “Death isn’t a medical experience, it’s a social experience.” Are we acknowledging the impact our patients have on us? Are we taking a moment to acknowledge our own emotions? Rituals aren't just for patients and families - staff members can benefit from ritual.

In his presentation, Ivor emphasized, “Death involves everyone. Design accordingly.” Ivor implored to the audience that it is all of our responsibilities to think about designing for a better end of life, not only as professionals, but also as humans.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and a regular contributor to Pallimed. She is the author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW.

Title Teacup: Morgan Sessions via Unsplash
Candles Mike Labrum via Unsplash

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