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First Person: Leon Rosenberg, 81, on Death as a Practical Matter (Video Interview)

How does our relationship to death change over the course of our life?

Photo of Jim Rosenberg

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Leon Rosenberg is 81 years old. He is a retired child psychologist living in a graduated assisted living community (and, full disclosure, he happens to be my father). Many of the posts in this Challenge highlight how far we keep death from our experience. Leon shares a bit about how our relationship to death changes over time, and what life is like when death becomes a more prosaic part of your day. 

My father and I talk all the time. I realized after our conversation that we've never talked this long about death. I know the mechanical stuff -- my parents' advance directives and their preferences for end of life -- but never appreciated how he deals with the emotional "existential questions" while being part of  a community where deaths are a common event.  


"First Person" is an experiment we are trying during this challenge to see how we might use video interviews to add inspiration and spark conversation. Let us know what you think!

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

How are our relationships with death different across different communities and segments of society? Can we collect stories from other elderly people who have different spiritual beliefs, are living in very different circumstances, or have different histories? Can we talk with people from other age groups or religious or cultural groups?

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Photo of Alex

It is true that our views towards death change over the lifetime and it would not be the same what we had when we were young. We will get more matured and by the time we have become old, we would be having a very different perspective and idea about death.
www.babyloncitytours.com

Photo of Anne-Laure Fayard

Thanks Jim, and Leon, for sharing this personal perspective. It's interesting because this morning, thinking of the challenge, I realized that talking about death with my parents was not something natural. I wondered, and even more, how I could start this conversation.
I particularly like Leon's point about the existential discomfort of "losing out". I wondered if there are ways to cope with this, or if it's simply an ongoing practice of acknowledgement. What can be the things that help us in this process?
I also thought his point about how when writing his will, he was able to shift it from "his death" to "the future of his three sons". 
Thanks again for sharing.

Photo of Jim Rosenberg

Thanks Anne-Laure. It was really interesting to talk with my father this frankly about death. It is hard to get started but I realized that it's a really great way to learn more about him and his feelings about life these days. I think it's a conversation that needs to be ongoing too -- not every day, but as a part of our relationship so I don't make assumptions about what my parents want without realizing their views have changed over time. Thanks again for the thoughts.

Photo of Bettina Fliegel

Hi Jim.  Thanks for sharing your conversation with your dad.  Losing friends as one ages is very hard and moving to a place where there is a community, making new friends, and losing them - well I have a lot of empathy for the process of aging.  It is painful.  For me not so much to worry about one's own death but to constantly experience loss of companionship.  I think it must be really rough.  Thank you to your dad for his share here!

I popped over to this post as I was thinking about Ned's Music post.   https://challenges.openideo.com/challenge/end-of-life/ideas/music-at-the-end-of-life/comments#!c-09600eb1c2052949c06682288a3231ca-ready
I think in some posts there is an assumption that imminent end of life happens in a hospice, or maybe a hospital setting, but as your dad shares in the video end of life is frequent in assisted living communities, sometimes several people pass away each week.  I think this is important to remember.  These communities would be great places for design interventions around end of life, and this is part of the communities' everyday experience as it is in a hospice but in a very very different way.

Photo of Bettina Fliegel

Hi Jim.  Thanks for sharing your conversation with your dad.  Losing friends as one ages is very hard and moving to a place where there is a community, making new friends, and losing them - well I have a lot of empathy for the process of aging.  It is painful.  For me not so much to worry about one's own death but to constantly experience loss of companionship.  I think it must be really rough.  Thank you to your dad for his share here!

I popped over to this post as I was thinking about Ned's Music post.   https://challenges.openideo.com/challenge/end-of-life/ideas/music-at-the-end-of-life/comments#!c-09600eb1c2052949c06682288a3231ca-ready
I think in some posts there is an assumption that imminent end of life happens in a hospice, or maybe a hospital setting, but as your dad shares in the video end of life is frequent in assisted living communities, sometimes several people pass away each week.  I think this is important to remember.  These communities would be great places for design interventions around end of life, and this is part of the communities' everyday experience as it is in a hospice but in a very very different way.

Photo of Jim Rosenberg

Hi Bettina, thanks and I'll pass along your nice comments to my dad. In his career he was a child psychologist, a psychiatric resident advisor, and a graduate school professor -- he's always loved it when something he knows can help other people see things in a new way :-)
 
Your point about the different environments in which the end of life happens is really important. Hospice, hospital, assisted living, home care (but not hospice). Urban, rural, wealthy, economically strained. And so on. I think we could do an Ideas phase on each of these very different experiences and generate a lot of great opportunities.  

Photo of Bettina Fliegel

I agree.  I also think it would be great to tweak ideas for different communities during this challenge.  It is not a one size fits all approach.  Truthfully the number of people utilizing hospice services is very small compared to those in other situations.  I look forward to seeing a variety of ideas in a variety of settings!

Photo of Jim Rosenberg

That's a great way to think about it. During the Refinement phase one of the challenges for each team could be to describe how their solution is used in the most common end of life environments (and maybe how it is used by a set of  different demographic groups). This would help everyone think about where the solution fits and where it doesn't. The matrix could get big quick so maybe each team could start by simply indicating the environment:group pairs for which the solution is intended. Then maybe they could do a quick, simple experience map for each. Or perhaps create an experience map for their primary area of focus, and then just write a paragraph about how the experience is same / different for each of the other intended applications. The latter might be more realistic for the Challenge. 

Photo of Bettina Fliegel

Yes!!!  I think that is a great idea.  Maybe share with the OI team when you check in with them as Community Activator?  It seems from the challenge brief that the majority of people now die in hospital or in a nursing home.  Interesting because we have not seen specific mention of nursing homes in many posts.  Might also be that most that die in the hospital are transferred in from nursing homes. Did you see any research posts with information about end of life environments?

Photo of Jim Rosenberg

I'll bring it up with OI at our next check in (which I think may be tomorrow...). I haven't seen any research posts on the end of life environments. That's a great question, here's a few facts that popped up in a quick search:

Most deaths (70 percent) occur in those aged 65 and older. Older adults want better discussions, information, and a chance to influence decisions about their care — whether to be at home or in the hospital and to have CPR (cardiopulmonary resuscitation) (Foley, 1995). Most Americans die in hospitals (63 percent), and another 17 percent die in institutional settings such as long-term care facilities (Foley, 1995; Isaacs & Knickman, 1997). In addition, most people are referred too late to hospice or palliative care, so they are unable to get the most benefit possible from these specialized services.

A bit more data on places:
http://www.pbs.org/wgbh/pages/frontline/facing-death/facts-and-figures/

A bit closer look at the environments for the elderly and less wealthy by looking at Medicare:
http://www.forbes.com/sites/howardgleckman/2013/02/06/more-people-are-dying-at-home-and-in-hospice-but-they-are-also-getting-more-intense-hospital-care/#2dd8d2272900

Photo of Bettina Fliegel

Thanks I will check these references out.   I read about a community health program for migrant workers in rural Texas that is addressing the elderly in their community, ways to keep them active and independent.  I thought that that might be a program, working with the underserved, to think about building onto for planning - wills, advanced directives etc.    I think I will post an idea.  How about "Poker and Planning?"  (thinking getting them in for some games -  creating a speaker series or set of workshops to go along with it?)

Photo of Jim Rosenberg

I like the idea of integrating into other, everyday experiences. I'd be interested to see more on the idea!

Photo of James Takayesu

Thank you for sharing this incredibly rich insight into living with death as a reality of daily life.  Having been in discussions with my parents who are reaching their 90s, this is often a source of resistance in moving into a retirement setting.  From our perspective, we focus on the social engagement and peer relationships.  But clearly there is also the regular and more concentrated reminder of the inevitability to death compared to living in the community.  To me, this underscores the importance of becoming familiar with death as we live so that we can be better prepared to witness it as we age or become ill.  

Photo of Jim Rosenberg

Thanks James

Photo of Oonie Chase

The way your dad talks about "everyone around here" made me wonder if he is living in assisted living.  He talks about the "celebration of life" that happens in the community in the wake of a death.

I'd love to know how other assisted living (or similar) communities of the aged treat, handle, talk about the deaths that happen in their midst.  The rituals & such.

Photo of Jim Rosenberg

Hi Oonie, my parents are living in a graduated assisted living community. They are in their own apartment now but their are stepped care options available there for them and others as they reach the point where they need the help. I really like your idea -- it would be interesting to talk with people who help manage assisted living communities to learn more about how they are designed to integrate the reality of death into community life.

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