End of Life: An Experience Re-Design

Toward the end - RaffaellaBlog post by Stacey Tinianov. Stacey, @coffeemommy is a community engagement consultant and on the Advisory Panel for the OpenIDEO Challenge “Re-Imagine the End-of-Life Experience.”

Each of our lives is a story. Let’s re-imagine how we prepare for, share and live through the final chapter.

Death is not an opt-in or an opt-out proposition. Whether you believe in an afterlife or a single opportunity to live your best life on this planet, an end-of-life experience is inevitable for each of us. For some, the end-of-life (#eol) experience involves reactive and futile attempts to keep death at bay. For others, careful thought and consideration go into planning final days, weeks and months

As a society, we plan for many of life’s events and milestones including birth, coming of age, graduation, marriage, etc. but few people spend time thinking about the experiences that would best represent and potentially even celebrate their life at the end of their life. We document ‘bucket list’ activities to complete before we die yet we often neglect to discuss specific preferences for those final days.

Sometimes the end-of-life takes us and our loved ones by surprise and other times end-of-life can be anticipated. Perhaps an expected death related to disease allows for more concrete planning and conversation. Perhaps it does not. How might we plan for the uncertainties that bring us to those experiences? And then how do we plan for those experiences?

Consider the idea of a birth plan. Parents-to-be document their idea birthing experience, share with their providers and their loved ones in order to have the most personally positive birth experience. Might we consider an end-of life plan? What would that look like?

OpenIDEO, in conjunction with sponsors Sutter Health, Ungerleider Palliative Care Education Fund and Helix Centre, has kicked off a new challenge:

How might we reimagine the end-of-life experience for ourselves and our loved ones?

Each year around 55 million people worldwide and over 2.5 million in the United States face the end-of-life. In the U.S., the end-of-life experience has shifted dramatically since the 1950s, as death has moved away from the home into institutions like hospitals and nursing homes. By the 1980s, less than 17% of people died at home. We believe the people and unmet needs behind these numbers inspire a huge opportunity for design.

~ OpenIDEO Challenge

While each of you is invited and encouraged to visit the Challenge website to include your inspirational and creative ideas, we’ve also taken to the Twittersphere to generate conversation and input to this challenge.  Please join us on May 24th at 8:30pmET (for your local time click here) to participate in the conversation and help us reimagine the end-of-life experience.

Questions for the Tweetchat:

  • T1 How might we foster open communication about #eol in order to generate and share ideas about reimagining the experience?
  • T2 When and how should #eol conversations begin? Who should be involved?
  • T3 How might a redesigned #eol experience look different for different ages or diseases?
  • T4 What other ideas do you have for how we might we re-imagine the #eol experience?


“At end of life, doctors and families often differ in expectations”, Ashley Welch, CBS News, May 17 2016, http://www.cbsnews.com/news/better-doctor-family-communication-needed-at-end-of-life-study/, accessed May 20 2016

“The Journey Ahead – End of Life”, KVIE, March 23 2016, http://vids.kvie.org/video/2365693930/, accessed May 20 2016

“A good death should be doctors and patients’ last life goal”, Rohin Francis, The Guardian, May 9 2016, http://www.theguardian.com/healthcare-network/views-from-the-nhs-frontline/2016/may/09/good-death-should-doctors-patients-last-life-goal, accessed May 20 2016

“Palliative and end of life care communication as emerging priorities in postgraduate medical education”, Amanda Roze des Ordons et al, Canadian Medical Education Journal, March 31 2016, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4830369/, accessed May 20 2016

“Doctor’s Notes: Palliative care is not about dying, but about quality of living”, Dr Jeff Myers, The Star, May 9 2016, https://www.thestar.com/life/health_wellness/2016/05/09/palliative-care-is-not-about-dying-but-quality-of-living.html, accessed May 20 2016

“Vulnerable in England denied choice of where they die, says report”, Jayne McCubbin, BBC, May 9 2016, http://www.bbc.com/news/health-36247499, accessed May 20 2016

“On Death and Dying: Opening the door to discussion”, Tara Baysol, Cancer Knowledge Network, May 5 2016, https://cancerkn.com/death-dying-opening-door-discussion/, accessed May 20 2016

“A nurse by herself. At the end of life.” Amanda Anderson RN, KevinMD.com, October 13 2015, http://www.kevinmd.com/blog/2015/10/a-nurse-by-herself-at-the-end-of-a-life.html, accessed May 20 2016

“How To Avoid A Family Feud At The End Of A Loved One’s Life”, Susan R Dolan, Huffington Post, May 6 2016, http://www.huffingtonpost.com/susan-r-dolan/end-of-life-discussion_b_9789304.html, accessed May 20 2016

“A better way to die? California’s end-of-life law launches June 9”, Claudia Buck, The Sacramento Bee, May 5 2016, http://www.sacbee.com/news/local/health-and-medicine/article75967042.html, accessed May 20 2016

Image Credit

Toward the End – Raffaella – https://flic.kr/p/8HRSYT

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