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"My Last Sound": What is the last sound you wish to hear at the end of your life?

Help humanize patient experience, one soundscape at a time

Photo of Yoko K.
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Who is your idea designed for and how does it reimagine the end-of-life experience?

It is for everyone. Our team member/contributor, Julia Wardle, is a sign language interpreter, and her focus is the socio-political analysis the deaf community at Georgetown University CCT, and we are making sure everyone - including the community of the deaf and hard-of-hearing - is included in the dialogue.

Update (9/4/2016): Yoko was in Iceland for Saga Artist Residency, interviewed people with the question "what is the last sound you wish to hear at the end of your life?" and gathered responses, then created a site specific music piece that she performed on September 4th.


Update (9/7/2016): Yoko will be at Stanford Medicine X to continue interviewing people and gather responses, and create another site specific piece to be performed on September 19th.


Some people say hearing is the last sense to go when we die.  

What is the last sound you wish to hear at the end of your life?

http://www.sensound.space

Having a sound will implies planning, it implies a state of mind – how can I prepare now for my ideal end-of-life experience? Although death is not always anticipated, the idea of the sound will can be used in important situations to empower people at the end of their mortal journey. 

Currently, our team is working with Sibley Memorial Hospital to understand noise issues from a human perspective.  I am also doing fieldwork at hospice/palliative care centers to find how creating a thoughtful sound environment can affect our sense of dignity.  This matches perfectly with Bettina Felgel’s thoughts of "hospitals and healthcare as an ecosystem." 

My mentor, a community physician, told me that first we have to heal patients, then we heal healthcare staff, then we heal hospitals, then we heal the community, then we have to heal the healthcare system as a whole. As an expert patient (with really sensitive ears) I believe the heart of "patient experience" is in the interaction with staff - so improving the experience for staff is the fastest and surest way to improve patient experience. 

Right now hospitals have a noise issue. We are trying to reduce and to mute the noise. But studies have also shown that silence can feel surreal and it can detract from the serenity of our environment (Patrick Grahn). The sound will can help the healthcare community to customize the end of life experience, especially when patients reach the point at which they are no longer able to dictate their own environment. The wonderful documentary Alive Inside shows the power of music to help people affected by Alzheimers be able to remember themselves and experience more. BJ Miller says that today, “the most we can hope for in hospitals is numbness. Anesthetic. Literally the opposite of aesthetic.” 

What we want: Hospitals can prompt sick and dying patients to think of a sound will – it will empower patients. We can give agency to people who are at a stage in their life when they are no longer active, they are just being acted upon. It can also transform hospitals from a focus on disease control and prevention to a focus on personal spiritual and emotional needs. Maybe this will come in the form of pamphlets (hospitals currently have pamphlets for getting your affairs in order, etc.) that will mention a sound will option. Geriatric nurses could make it a practice to ask patients about their sound will. This idea is a behavioral fix that can humanize dying. 

We are starting a social media movement with @SenSoundSpace #soundwill on Twitter and through our website/blog Sound Will Project. We absolutely encourage everyone who reads this to post your thoughts there and to forward the idea - think of the places it could go!  The collection of response will inspire the interactive sound art performance at Stanford MedicineX in September 2016.  

· Ned Buskirk has an idea for Songs for the Dying. It is a wonderful way of acknowledging the value of art in our lives and memorializing life in ways that have been used throughout history – creating personal ballads for those at the end of life.

· Julia Wardle thought about creating a space where we can keep audio recordings of our family’s history. It would in essence become a genealogy library where you could go to create your own sound will or "my last soundtrack" - great idea from Sue Kempel - from those who have already passed on or from those still living, or you could pass on your sound will through the generations.  

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

- Site visit to Washington Home (one of the oldest hospices in the US), CEO gave positive feedback
- Design research with Sibley Memorial Hospital (Johns Hopkins Medicine) - having interviewed 40 patients to identify how sound impacts an individual's environment, experience and emotions
- Started the bulletin board to collect the response to the question www.sensound.space
- Collab with Stanford Medicine X to create a performing sound art piece based on the responses being collected

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

- I would like to have a dialogue with community members about the last sound they wish to hear at the end of life. I would also love if the community members can ask their friends and peers the same question.
- The purpose of this project, as of now, is to pose this question as a way to stimulate conversations around the end of life. Yet I would love the guidance as to how this idea could evolve into actual service design.

Tell us about your work experience:

I am an ambient electronic musician (http://www.yoko.mu); Kennedy Citizen Artist Fellow (https://vimeo.com/166897483); founder of Sen Sound (http://www.sensound.space); fellow at Halcyon Incubator (http://halcyonincubator.org/fellows/yoko-k-sen); made empathy robots at IDEO (https://vimeo.com/150137130)

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Photo of Dawn
Team

Yoko, this is truly inspiring work and much needed. I am sorry to have only just now learned of your performance at Stanford last month. I so would have loved to hear and meet you! Any chance you will be back in the bay area for the Re:imagine week at the end of this month? http://www.letsreimagine.org/#endoflife
I am looking forward to a time when the dissonant sounds of hospitals, which currently create aggravation, agitation and numbness, will be of transformed to "Sensound" and call us to want to approach those we are caring for with calm, tranquility and serenity. 

Photo of Yoko
Team

Hello Dawn!  Thank you for the message - indeed, I am planning to be at Re:imagine on October 24th and I will be presenting/performing.  I look forward to meeting you and learning more about you! 

Also here's the video from the talk (not performance) at MedicineX, if you are interested
https://www.facebook.com/stanfordmedx/videos/1204194359647980/?pnref=story

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