What's the Last Sound You'll Ever Hear?

Bringing new design to the way we die—what we see, touch, feel, and hear—is an idea with a strong tailwind. Advocates like BJ Miller, who was profiled in the New York Times this week, are spreading the message that we can do better for people who are dying if we pay close attention to human needs.

Sen, who gives Miller a nod in her video (see below), felt this firsthand when she was hospitalized for an illness. As a musician who started playing the piano when she was 3, Sen found the sounds of the emergency room traumatizing, and left committed to do something to save others from having the same experience.

We became instant fans of Sen’s work when she submitted it to our OpenIDEO challenge on end-of-life care, and gave a talk during Re: Imagine, a subsequent citywide conversation about death. We caught up with her in Washington D.C., where she’s a fellow at the Halcyon Incubator, a program that supports social entrepreneurs, and asked how she’s planning to bring beautiful sound to the people who need them most.

IDEO: WHY IS MUSIC SO IMPORTANT AT THE END OF LIFE?

I would say sound is important at the end of life, which includes, but is not limited to, music. For instance, a lot of people mention nature sounds as something they want to hear at the end of life; other examples are voices of loved ones, laughter, etc. You can hear people's responses here.

Sound is important because some people say hearing is the last sense to go when we die. I believe it has a profound effect on our sense of dignity, not just for the person dying, but also for those around them.

IDEO: HAVE YOU SEEN EXAMPLES OF THIS?

Morgan, a palliative care nurse in NY, got in touch with me after she saw the idea on OpenIDEO. She said that her team started to play a song moments before a patient's death to liberate them from the ventilator, with the expectation that they would die in the next few moments. The question inspired her to use her own iPhone to play music for the patients. One cancer patient she became very close with shared his favorite music, and she played that for him. People’s preferences are different, so it’s tough to find something that’s universal. It’s very awkward to say, “I’m assuming you’re going to die soon, what kind of music do you like?” I got the impression that it was helping her team and the family members as much as the patient. You can’t interview the patient after they’ve passed away—“how was your dying experience?”—but you can talk to the family and the nurses. I heard from cancer nurses at Sibley that when a cure is not possible, they are empowered to heal in other ways—do something seemingly simple that makes a big impact.

A couple of people mentioned that they played music when their grandparents passed away. “I had a sense that she could hear the music or my voice even though she couldn’t react to me,” or “I have faith that she could hear me.” It’s a story that we create for ourselves, but, as those who are left behind, feeling that we have made a positive impact gives us a sense of peace.

IDEO: ARE YOU PILOTING SEN SOUND IN HOSPITALS?

Yes, we are already working with Sibley Innovation Hub (part of Johns Hopkins Medicine)—though not necessarily focused on "end of life"—to test our ideas to transform the sound experience for patients.

As for the "end of life" sound—for now it's an art/conceptual project. I record the voices of people sharing stories of the sound they wish to hear at the end of life, to raise awareness on the importance of sound.

I also believe that it is a way to build resiliency in the community, by allowing us to approach the taboo subject with a somewhat light-hearted, playful way. It's dreadful to imagine death itself, but by imagining the sound, it's somewhat more approachable.

I would love to continue exploring ways to implement the idea with hospice and palliative care centers, and we are in conversation with a couple of facilities. I have done this as an artist and will always continue to do that, but I’m at the point where I’m transitioning to trying to inspire a team to do this.

It’s going to take time: Any medical conference you go to is about winning the fight [against death]. But this is a project to build resiliency in the community. There’s no wrong answer. If a young person says to me “I don’t like to think about how I’m going to die,” that’s okay. But I want to help people build a sense of community, to create music or sound or jam with the person with the same illness but not the same geographical location—connecting people who really need it through music and art.

For more about Yoko's work check out her piece in the OpenIDEO End of Life story collection.