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School for The End of Life

Designing a lecture series focusing on optimizing control over end of life conditions and decisions.

Photo of Peter Stangl
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School for The End of Life


Leonard Cohen, singer and songwriter, decided he would start to smoke again on his 80th birthday, so wrote Jason Karlawish in the NYTimes in 2014.  When I read this I was amused at first, but then started thinking.   I quit smoking over forty years ago.  It was the hardest thing I had ever tried in all my life, but I was sure it was absolutely worthwhile.  I felt I had to do it for the sake of my kids who depended on me, and also for my own sake.  But now I will be 80 myself this year.  Long term survival in order to be a support for my kids is no longer my top priority.  So why not just do the things I enjoy even if they are considered “bad for me”?


Well, I have not started smoking, yet. 


We now live at Channing House, a retirement community, where the average age of residents is well over 80.  Not surprisingly, daily life here is rife with references to our impending demise, as neighbors and friends suddenly pass away with unexpected frequency.  No wonder that I kept noticing the building volume of EOL (End of Life)  related articles in the media.  The more I read, the more I realized that we, as a society, may be going about handling death the wrong way.


Our life expectancy keeps increasing.  A growing percentage of the population is not just aging, but outright old, with the accompanying decline in vigor, and the weakening of our physiological systems.  Meanwhile, medical schools train doctors to treat diseases with ever more sophisticated procedures that rapidly developing medical technology makes available.  The result is that heroic medical interventions are routinely ordered for frail, old, declining patients who often are not in a good position to profit from these interventions.  As a result, what is intended to prolong a life, often turns out to prolong death instead.  And frequently it is not what the frail, old patient had hoped or wished.


Why is that?  How can that be?  We are supposed to have rights, aren’t we?  Don’t we?


We do – sort of.  We can make advance directives – ahead of time.  And sometimes they are consulted, if we are lucky.  But what is clear is that they do not offer any guarantees.  So do we have no control over what happens to us at all?  That is correct – control is not what we have.  We may have some influence, without absolute assurance.  And even to have influence we have to do things just right and have to coordinate the various factors at work, if we are to succeed.  In other words, everyone around us, family, loved ones, and caregivers have to know and agree with our wishes, so no arguments or battles develop at the critical time.  And that can only be achieved with clear headed, honest discussion among all interested parties.


This goes against the grain for too many of us.  Most of us tend to avoid discussing death.  As a result we are relinquishing the chance to exercise influence over how decisions and conditions will turn out during our last days.  How can we change this pattern?  It requires a culture change.  A tall order, indeed.  It can only be done in three ways:  education, education, and education.  Alas, the genesis of ELIPSIS, a seminar series for the residents of Channing House, in the fall of 2015.  Seven lectures by invited speakers covered medical ethics, spiritual issues, hospice services, “The Conversation”, and legal documents, besides an introduction and a summary.  A resounding success, based on extensive feedback, with calls for a chance for non-Channing residents to have access to the same information.


As we speak, our small group is currently working diligently to organize a similar series for City seniors.  ELIPSIS 2016 is based on last year’s lessons with a broader scope of coverage.  It will include topics not covered for Channing House, such as preparing for retirement, selecting a community or preparing to age at home, getting financial and legal arrangements and documents in order, and so forth.  The central theme remains the same: communication in order to optimize chances for as comfortable and pleasant a life while aging, as possible, including during the last event of our lives. 


While we think we have an idea of how to shape the series, adding a little design thinking looms as a tantalizing prospect…


What is a provocation or insight that might inspire others during this challenge?

Living in a retirement community where the average age is over 80 teaches you about the end of life.

Tell us about your work experience:

No design, no business. Healthcare yes, marginally. Retired as Stanford's Med School library director.

Attachments (1)

Will you help me? S&S.docx

This is a story I wrote a couple years ago about being in a coma and near death. I had a difficult time in selecting a Mission above. I could have checked #3, "Imagine an Experience". That is where this story belongs.

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Photo of Jonathan Gifford

Tremendous, Peter. Your explanation is clear and enticing, backed up from your experience with last year's EOL series.

I would like to learn more about:

- the content
- the speakers and their backgrounds, as every profession offers a different and enhancing point of view
- the role of interactivity among the attendees
- the chance for capturing this knowledge and sharing and developing continuously in a community online/offline throughout the year
- a forum where people can share stories, like your good short story attached, or even personal narratives - these provide a "grip" which people can relate to and help in imagining the end of life, activating creative thinking
- connecting with the many other projects in this OpenIDEO challenge, as I would imagine your group would be very valuable as a source for human-centered design research and participation!

Don't be afraid to look at the other submissions, applaud, and reach out - so much rich experience to be shared here.

Best,
Jon

Photo of Aaron Wong

Hi Peter and Jonathan, great ideas!
Education and open discussions can be empowering, especially when at the end of life when priorities shift. There are so many areas this educational program can touch on.
Along the lines of teaching and learning check out Michael Vargas ' post Leaving a Legacy  . There might be ideas you two could work together on in the next phase!

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