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Death-Ed: because abstinence is not an option

Death-Ed aims to normalize and prepare our youth for the ultimate life challenge through which we will all pass.

Photo of Dawn Gross
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Who is your idea designed for and how does it reimagine the end-of-life experience?

Sexual education in schools began in 1919, with a resultant drop in unwanted pregnancies and sexually transmitted disease. Today, there are drills for lockdowns and earthquakes, yet nothing about death and dying, a practice arguably more prevalent and a part of life than sex. Our schools are an entire century behind recognizing the importance of and developing death education. Death-Ed aims to normalize and prepare our youth and families for this essential survival skill.

Updated 7/17/2016:

Modules created for high school Health curriculum will cover the following areas:

1) Creating A Safe Space-establishing ground rules of respect and privacy; practicing listening and story-telling

2) Myth vs Reality-popular television video clips will be shared to compare and contrast factual data regarding care for the seriously ill, rates and types of recovery and prognosis. How we die, depending upon age, race, education and socioeconomic status will also be reviewed.

3) Cultural Diversity-Students will have the opportunity to either share their own cultural rituals/practices/beliefs around death and dying or they may research a culture or practice and share what they have learned with the class.

4) What Matters Most-using the game, "Go Wish" (http://www.gowish.org) students will begin to explore their own values and how to share them with their peers.  They will then have homework to play with their family. Development of an app for GoWish will foster its ease of use while simultaneously expanding its functional capabilities and accessibility (http://https://vimeo.com/65924773).

Additional opportunities for students to volunteer with hospice and palliative care teams could be developed to further enhance exposure and comfort with the concept and processes around death and dying.  Follow-up questionnaires several months after these interventions will assess the level of comfort the students have developed around death and dying (http://http://www.cmeeharley.org/programs/hospice-program/).

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

Updated 7/17 and 8/1:
Initial focus groups with students continue to provide enthusiastic support for the concept. Feedback reinforces the approach of utilizing video clips, apps & interactive card game/role playing tools.

We will pilot our curriculum in two private local high schools with demonstrated interest in pioneering programming. The program will begin with a pre-evaluation to assess knowledge about and comfort with death and dying and 12 month post-intervention evaluation.

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

Curriculum development and models of collaboration with the education system particularly in peer-educator development.
App developer to collaborate on making "Go Wish" virtually accessible by creating "Ripplan" app (see demo video https://vimeo.com/65924773).

Tell us about your work experience:

Jessica Nutik Zitter, MD, MPH is an ICU & Palliative Care physician, author & has taught Sex-Ed to high school students.

Dawn M. Gross, MD, PhD, palliative care physician, writer & radio host of "Dying To Talk" on 91.7FM KALW has developed & taught nat'l award-winning prenatal Ed in high school.

This idea emerged from

  • A group brainstorm

46 comments

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Photo of mitch Lee
Team

Hi Dawn and Jessica,

Well done! You could not have timed your idea going to market any better! And what an opportunity to educate young people on morality at a time when they have more than likely experienced the death of a significant other (e.g., a great grandparent). 

I have a two part question regarding curriculum development.

What age do you intend to teach death-ed to within high schools (e.g., will you develop content appropriate for every year group or the same content for every year group)?

And, at what age in a human's lifetime does death affect them the most? I suppose what I'm asking whether there is more value to death education for tennagers (who have typically experienced the concept of death indirectly through the loss of great grandparent and/or grandparent) compared to say, a 50 year old male who has lost his mother. In essence, statistically, at what age do people experience a direct loss to a family member? There may be more demand and value for your concept if the link to death is direct, not indirect. 



Again, this is just a ramble. 

I can't wait to see the finished offering.

Kind regards,
Mitch

Photo of Paul Ennis
Team

Mitch,

From one ramble to another...

The experience of death is all around all of us everyday.

There may be statistics related to your query - my take is that getting caught up in statistics will just get you and others 'caught up'.

Death Ed curriculum materials need to be developed for all age levels of 'kids' - from Pre-Schoolers to College Grads.

And, death positive outlooks on life and living and dying need to be encouraged throughout our culture and throughout all of our varied social strata and communities.

That way, when the 50-year old loses his Mother - he will be just as prepared as the 4-year old Grand-daughter of that same 50-year olds' Mom. Make sense?

It is a cultural and very broad-based attitudinal shift that we're all a part of making happen.

At this point in time, there are various sized pieces of the puzzle being brought into focus by many, many different people and groups.

Within the OpenIDEO right now there are 10 'puzzle piece makers' who've just been recognized, applauded and encouraged for their ideas and projects (out of over 300 different stories/ideas that were originally birthed within this community).

No doubt it's a big shift in consciousness/awareness - and we're a big, multi-talented, inspired, very powerful group of humans who've had enough of some kinds of things and not enough of others.

In brief, more love less fear.

Them's my two cents on the topic for this morning.

Enjoy your day...

Paul/HDCR

Photo of Dawn Gross
Team

Hello Mitch. I so appreciate your thoughts and we couldn't agree more. We recenlty taught our first pilot to high school freshman. You can read a bit about our experience in Jessica's recent oped: http://nyti.ms/2lYDY3N

We chose to start with this class for several convenience and logistical reasons. Specifically, all freshman year of high school health ed class is one of the only core classes for all students. Jessica and I have modules that can be expanded and modified to support follow-up/older learners (for example, including Advanced directives workshops). We can also easily imagine modifying the curriculum for younger students similar to Sex-Ed.

Thank you for your interest!

Photo of Liz Salmi
Team

I've been saying for years that something like this is needed! I'm excited to see how this pans out.

Photo of Dawn Gross
Team

Thank you, Liz! We are hungry to satisfy your need and bring this education into existence.  We welcome and appreciate your support, insight and expertise!

Photo of Dawn Gross
Team

Hi Liz. Given your interest in seeing how Death Ed "pans out" I wanted to let you know we just taught our first pilot and are gearing up for more. You can read a bit about our experience in Jessica's recent oped: http://nyti.ms/2lYDY3N
Thank you for your interest and support!

Photo of Zaahira Wyne
Team

Hi Dawn and Jessica,

LOVE this idea and am especially interested in possibilities for incorporating experiential components in the curriculum. It's one thing to discuss the end-of-life experience--though, admittedly, that would be a HUGE step towards normalizing it--and another to actually bear witness to it (speaking from experience). In the age of "trigger warnings", that might be a controversial line of thought, but I have an idea for how to make it (maybe) more palatable. How can I get in touch?

Photo of Dawn Gross
Team

Hello Zaahira,
Thank you so much for your thoughts and feedback. If you are still interested we would love to learn more. We have taught our first pilot and are gearing up for more. You can read a bit about our experience in Jessica's oped: http://nyti.ms/2lYDY3N
 You can reach me at Dawn@dyingtotalkradio.com

Photo of Teri Rose
Team

I am so excited about this both as a former teen who had great loss in my four years of high school. Several car accidents and a suicide and no one to talk to about it. This was many years ago but a small school and no one discussed it. My friends and I (now in our 50's) have all discussed what a big impact it had on our lives and how we suffered because we only had each other. I also think it is a great idea to expand it to a younger crowd. After working many years in pediatric hospice, I witnessed many kids who had a difficult time coping with loss. As a society we have gotten better about discussing it (even with children) but have a long way to go. This is awesome Dawn.

Photo of Paul Ennis
Team

Dawn - A very timely and well-targeted project/program. Glad to be in the 'Top Ideas' with you and the others. Please keep in touch as your curriculum and content materials are being developed so that a Home Death Care perspective and component can be included that's appropriate for the various age levels you will be working with. What I've learned is that the ICU, ER and funeral home death/dying experiences many kids are subjected to - do serious damage to their hearts and minds that lasts for long periods of time. While the more realistic and reality-based Home Death Care types of experiences, while perhaps more intense in some ways, provide many more opportunities for deep understanding and true growth that will actually benefit them over their lifetimes. Perhaps I'm 'preaching to the choir', no need to say more now. Best of luck moving forward within the OpenIDEO. Keep in touch as needs be. Best. - Paul Ennis/HDCR

Photo of Dawn Gross
Team

Bravo, Paul. The choir loves this preaching!  

Photo of Paul Ennis
Team

And, I'm so glad. It's all good within the OpenIDEO community. Talk more soon... - PWE

Photo of Dawn Gross
Team

Thank you for sharing your experience and support, Steve. I am encouraged by your story and by the consistently bold and courageous voices of our youth advocating for their own learning. Perhaps as adults, we are beginning to trust and listen to their inherent wisdom...

Photo of Steve Heilig
Team

Wonderful.  Twenty years ago I was invited to submit a proposal related to healthcare to a major foundation; I chose death education for kids and was flown across the country to pitch it.  There were few relevant resources available and I mostly just wanted to help develop some. I did not get the fellowship; later I was told that "the topic made the board uncomfortable."  I had a similar response from the CA Academy of Pediatrics and Adolescent Medicine. Hopefully times have changed and this goes forward.  Congratulations.

Photo of Dawn Gross
Team

Jessica and I are honored and thank the OpenIDEO community for your ongoing inspiration and support.
Together we can transform the taboo..sooner rather than later. We look forward to bringing Death-Ed to a school in your neighborhood!

Photo of OpenIDEO IDEO
Team

Congrats on being a Top Idea, Dawn! It's been absolutely inspiring to see how you've developed Death-Ed to reimagine the end-of-life experience for ourselves and our loved ones. What an amazing journey it has been. In the coming weeks, we'll be making an official announcement to celebrate you and the other Top Ideas of the End of Life Challenge.

In the meantime, we would love for you to share your story in the upcoming End of Life Impact Phase. The Impact Phase is a space where the OpenIDEO community can share updates on how our projects are progressing beyond the challenge. For reference, here's a template for writing an Impact phase story:http://ideo.pn/1U9DrSN Well done Dawn!

Photo of Dawn Gross
Team

Thank you Katherine, for your work & Facebook comment:
"This looks like a great proposal! And a wonderful concept. When I was teaching a first year seminar (for several years, 2004 to 2012) I included a unit on death and dying. The students weren't too thrilled with the idea and hoped we'd run out of time, but I never did! Turned out many of them had experienced death personally, mainly grandparents but also friends who had died in traffic accidents and some who'd died by suicide. Creating a safe space for them to talk was key to allowing them to open up. I published an article about it in the Journal of Palliative Care. Great work!"

Photo of Dawn Gross
Team

Thank you, Beth, for your Facebook comment 
"This is a lovely idea which would help tremendously for children to learn to value their lives the lives of others and their relationships. Love it!!"

Photo of Dawn Gross
Team

Thank you for your interest and request for more information, Manal.  Due to limited space in the upload section, our focus group update is constrained.  Please know brevity of our words in no way mirrors the breadth of comments from students. What is consistent is what we added: videos and interactive games are most compelling. Perhaps less surprising, teens are not remotely put off by stereotypic imagery of death (i.e. skulls, skull & crossbones, tombstones...) yet similar images posed to adults appear far less engaging if not all together repulsive.

Photo of Manal
Team

Great idea - I love the engagement of teenagers in this conversation. Before the refinement phase comes to a close, I would love to know, what more have you learned from your focus groups? What are some insights that you will incorporate into the curriculum? It would be amazing if you could update this post with your findings on the curriculum. 

Photo of Lois Perelson-Gross
Team

Hi Dawn, Apologies for my slow reply. I meant to mention that I was traveling. I was thinking about the following partnerships/collaborations: Partners for Livable Communities www.livable.com. Generations United www.gu.org
www.unitedgenerations.ca/pdf/connectinggenerationstoolkit.pdf
http://www.activitytherapy.com/intergen.htm

http://innovation.seniorhousingnews.com/senior-living-residents-inspire-next-generation-of-tech-innovators/.   Experience Corps: A national program started in 1995 that mobilizes the time, talent, and experience of older adults in service to the community. It provides local schools and youth-serving organizations with caring older adults who can work directly with children, tutoring and mentoring.

National Senior Service Corps (Corporation for National Service). An opportunity for seniors to share their time and talents by becoming involved in Foster Grandparents, the Retired and Senior Volunteer Program, or the Senior Companion Program.

The Intergenerational Center: Temple University. Fosters intergenerational cooperation and exchange. It runs a number of intergenerational programs, including the Across Ages mentoring program, and offers training, publications, and videos.

Mentoring USA: Operates one-to-one mentoring programs, particularly for "at risk" young people, as well as offering resources and training.

National Mentoring Partnership: An advocate for the expansion of mentoring and a resource for mentors and mentoring initiatives nationwide.

International Mentoring Association:Western Michigan University, Lifelong Learning & Education. An organization made up of individuals and groups interested in the theory and practice of effective mentoring. I hope you find these interesting/helpful. I love this concept! 

Photo of Dawn Gross
Team

These are incredible resources!  Thank you so much for sharing and thank you for your interest.

Photo of Joy Johnston
Team

Love the concept of Death-Ed. Facts about death should be taught like any other phase of life. The volunteer opportunity made me think of this essay I read about a hospice class offered at The Harley School in Rochester, New York. At the time I read it, I wished there were similar offerings available on a more widespread basis.  http://www.mindful.org/a-matter-of-death-and-life/

Photo of Dawn Gross
Team

Thank you and couldn't agree more, Joy. That article was certainly part of the inspiration and their program resonates deeply.  Would love to make some version of it widely available.

Photo of Lynn Lambrecht
Team

Dawn,
If I may be of any help, count me in :)  Lynn

Photo of Dawn Gross
Team

Thank you, Lynn.  Any particular aspect of DeathEd implementation that speaks to you?

Photo of OpenIDEO
Team

Welcome to the Refinement phase Dawn! Here are some key questions and milestones we encourage from all ideas in the Refinement phase:

1. How might this idea address the unique needs of the target audience you're designing for?
2. Clearly summarize the value offering of your idea in 1-2 sentences
3. Communicate your idea in a visual way with user experience maps http://ideo.pn/UX_Map
4. Identify assumptions that need to be answered in order to validate your value offering: http://bit.ly/1Oi8ZHu
5. Collect feedback from potential partners and users to answer the assumptions you’ve identified.

Lastly, here's a useful tip: When you update the content of your post, it'd be helpful to indicate this in your idea title by adding an extension. For example, you can add the extension " - Update: Experience Maps 07/12" to you idea title. This will be a good way to keep people informed about how your idea is progressing! 

Photo of Shane Zhao
Team

Hi Dawn, 

Here are some feedback from our panel of experts. Looking forward to how you might incorporate these provocations!

Your idea is simple, elegant, and easy to implement. We need to normalize death, and this is a step in that direction. We're curious if there might be a collaboration with the idea called Cusp – how do we rebrand the whole thing? What's a new symbol for death that might resonate with high schoolers? From a research perspective, Ivor, from HELIX, weighed in with feedback about how the learnings you gather will go toward one of the best ways to change

From a research perspective, Ivor, from HELIX, weighed in with feedback about how the learnings you gather will go toward one of the best ways to change culture. He's also interested in keeping up with your idea to see how your idea will change over time.

Photo of Dawn Gross
Team

Hi Shane,
Thank you for sharing the thoughts and feedback from your panel of experts.  

We really appreciate the CUSP idea and LOVE your question of a new symbol that might resonate with high schoolers.  We are currently in the process of working with a teen focus-group to address this and are already amazed by their suggestions.

As clinician-scientists, Jessica and I are both committed to obtaining feedback and "outcomes" measures with this work so we can learn how DeathEd is able to impact behavior and, ultimately, culture change.  In the beginning, the "outcomes" will likely fall into both qualitative and qualitative measures.  It would be wonderful to have a social scientist as part of our team to help us capture this type of data from inception.

Photo of Lois Perelson-Gross
Team

Comment: It sounds like there are possible synergies with existing programs that bring high-school students and the elderly together for companionship, mentoring, etc.

Photo of Dawn Gross
Team

No question, Lois!  Do you have particular programs in mind you can share with us?

Photo of Doug Wilson
Team

I love this! One idea for Joel would be to have students pair up and practice a conversation around "What makes life meaningful and worth living for you?" and "What abilities are so important to you that you think you'd rather not be alive if you didn't have them?"
Then students assigned to ask these questions of a family member.

Photo of Jessica Nutik Zitter
Team

Thanks Doug! Your ideas are along the lines of what we have mocked up so far.  Starting with personalizing the experience and and creating a safe space in the beginning, and then getting more specific about personal "do's and don'ts" around death.  We would then have the students work with their families to do the same.  

Photo of Joel Robert Putnam
Team

This is a fascinating concept, but while I'm clear on methods (card games, volunteer opportunities, etc) I'm not clear on what the content of the curriculum would be. Sex Ed has clear goals of students learning about anatomy, contraception, STI prevention, and other healthy sexual practices (among others). What lessons would you want to make sure that your students walk away with from a DeathEd class?

Photo of Lucy Stewart
Team

Maybe things like self care, grief management, communication.  Looking at DeathEd as a means to learn/teach the more nuanced/soft skills applicable for all aspects of life. For me, experiences of close ones dying has, at times, been oddly empowering in helping me to be more comfortable with vulnerability and more confident to communicate my needs. Those are valuable skills and DeathEd presents an opportunity to explore them. 

Photo of Dawn Gross
Team

We couldn't agree more, Lucy.  Ultimately, DeathEd is a lifeskill that evolves and can be tailored to different phases of life.  The core of the curriculum is in its aim to transform the taboos around talking about death.  Once that is established, then the plethora of experiences and skills become accessible to share and teach.

Photo of Dawn Gross
Team

Thank you for your interest and curiosity, Joel. As Lucy's subsequent comment suggests, content may be tailored for particular needs of the learners.  Please see Our User Experience Map and  the outline of the core modules we are imaging for the High School curriculum. The content specifics could easily be adjusted for younger or older learners.

Photo of Alyssa Frances Thompson
Team

Thank you so much Dawn and Jessica for this contribution. I wish I'd had something like this in high school. There were only about a hundred of us in a grade, and I remember that over those four years, two classmates lost parents very suddenly, a teacher committed suicide, several teachers and administrators had young children who became very ill, and many of us lost grandparents or watched family members suffer greatly with dementia. Every high schooler's life is touched by death and loss at one point or another, and at least in my experience, we simply didn't talk about it. I know we'd have had so much to say if given the space and a few tools.  I love the idea of piloting with private schools that have a willingness to try new things. I also work with brand new high school school teachers working in public schools, and one thing I am looking to integrate into training for new teachers is how to weave topics of great meaning (loss among them) into traditional classes (english, math, science, history). In that way, one could also bring aspects of this type of curriculum into public schools where it is so greatly needed. I could imagine a world where you had a standard death ed curriculum that could be taught as a stand-alone course, and an adaptable death ed curriculum that could be integrated with other courses. 

ps Danielle Meshorer love your thought to integrate global perceptions of death! Curriculum around loss is so rich with possibilities.

Photo of Dawn Gross
Team

Thank you so much for all you are doing in education. Your attention for the need to create explicit training on how to teach topics with inherent charged/deep meaning is brilliant. We would be most grateful to learn/partner with you on optimal ways to achieve this type of integration into standard as well as stand-alone curriculum.

Photo of Danielle Meshorer
Team

After experiencing the death of my father at age 17, then my grandmother and great aunt within a few years of each other, I feel I could have greatly benefited from a DeathEd class. Recently we just went through the death of my father-in-law and it was very different than my father's death.  I see that while the palliative care movement has made a great impact on medical care in the US, educating the family members who will need to navigate that evolving mindset has not found a formal place in our culture. Gratefully, a mentor recommended the Being Mortal for my husband to read.  It gave him the education in a few hours that we could of used earlier in life - to begin thinking and processing these issues before being confronted with the challenges of dying from illness in the US. To respond to Joel's question, I hope that the curriculum could shed light on the choices and restrictions we have in dying in the US context. Also you could look at the stark realities that exist in developing countries where people can't even have access to opioids (see recent Economist articles highlighting the problem) to help them die with less pain. It would be interesting to look at different religious and global cultural perceptions of dying in this curriculum, to open people's minds to the options. 

Photo of Jessica Nutik Zitter
Team

Thank you for sharing your story! We completely agree that it is essential to account for the broad range of personal preferences and experiences when teaching young people about how to manage this critical time of life. 

Photo of Jasmine Jones
Team

I think "death education" would be quite impactful as something taught in school and to teenagers (or even younger children). But I wonder if the emphasis on palliative care (which is generally associated with the very sick or elderly) is too narrow to truly encompass the deaths that teenagers regularly encounter. One approach would be, in your pilot study, to regularly have conversations with the students about where and how they encounter death in their everyday lives, and how it affects them. Stories about mass murders, hate crimes, and fatal accidents in the media come to mind, as well as stories about war casualties. Do we think about these deaths in the same way as we think about a grandparent slowly fading away? Should we? The broader philosophical questions about death-- especially for youth growing up in the United States-- should definitely be given due consideration and consciously discussed. 

Photo of Gary Skeete
Team

 The idea of making videos tapes transcripts commentary computer graphics memories photographs videos details of outings seminars workshops details of education details of exhibitions places people places things the ideas to create a portfolio or a scrapbook of information so that it can be transferred into digital reality with the Transfiguration of a photograph or video being transferred into a virtual reality construct with the pixels be photons the DNA  The constituents of a specialized camera for viewing that allows the image to be reproduced in 3-D format as a simulated living example 

Photo of Liz Salmi
Team

I love this. For YEARS I have been saying I wish we were taught how to navigate the healthcare system while we were still in high school--as part of health class.

The one thing I would change is to take one step back from "death" and make this a more expansive message focused on advance care planning (which would ultimately include the end of life process, death and grieving). Your curriculum already makes sense for the advance care planning vision--you include the Go Wish game, after all!

Part of the curriculum could include drafting an advance directive and bringing it home to share with parents. Bringing a message home to parents has helped in the environmental realm as more kids learn about recycling at school and then ask their parents to recycle and use less energy in the home. The kids end up teaching parents! I could see this same effect on parents learning the important message of advance care planning, EOL, etc.

Great concept.

Photo of Gary Skeete
Team

 A look into death with visual pictures with adaptations to animated simulations of particle physics collaborations with DNA and stem cell integration to formulate plans for resuscitation reanimation reconstruction repair in synthesis of DNA in self assembly polymerization and precise detail mathematically building pon this concept.

Photo of Lynn Lambrecht
Team

Dawn,
I love this - and CODA's Go Wish cards are terrific!  I'm glad my article inspired you :)  I believe that we can expand this conversation into a greater education opportunity and incorporate it into "life skills"!  What do you think?  Lynn