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Choose your own EOL adventure

Website with guided interface to help people design their EOL experience. Will help the EOL conversation and make transition more familiar.

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

My idea is designed for people of all ages, regardless of their state of health. EOL is a difficult topic because of the uncertainty and fear around it. The good thing is that not everyone is afraid of it, which is why we can have this conversation. My idea is to take guidance from those that have envisioned how they would like their EOL experience to evolve and use those as “case stories” or “examples” that other people can leverage to develop what they would like for their own experience.

My idea is designed for people of all ages, regardless of their state of health.  End-of-life is a difficult topic because of the uncertainty and fear around it.  Some people would like to be around their loved ones and environment doesn’t matter, others care to be alone in a familiar environment … all these things are very personal and if someone is afraid to think about it, it is difficult to get people to make the choices needed from a caregiving perspective to help them. Also, we imagine we have control about the experience, but what about situations where there is a tragic accident? That end-of-life experience can also be imagined.

The good thing is that not everyone is afraid of it, which is why we can have this conversation. My idea is to take guidance from those that have envisioned how they would like their end-of-life experience to evolve and use those as “case stories” or “examples” that other people can leverage to develop what they would like for their own experience.  We can have a “menu” of options for each element and people can decide, for each attribute, which options they would prefer for the situation.  Or it can even be simplified and people can identify who they would like their end of life experience to mimic.

By doing this, not only do we ease the conversation around EOL, but we can define it for ourselves, making the transition more familiar when it happens (because we have imagined it) and also easier for our caregivers/family (because they know our wishes).  By defining how we would like it to look, we can take the necessary steps now to get us there. Plus this conversation can allow us to balance emotions on not just what we are leaving behind, but also on where we are headed.

One important thing in all this will be for individuals to think about a time-scale for how they would define end-of-life, meaning is it clinically identified last days or last months for them, or just when they know they are aging and want to make changes to how they are living life to prepare for death. 

I’m imagining a website/database that includes:

  • examples where people have already thought out their end of life experience (and people can decide to make their info public if they would like to add to examples). 
  • menu of options for each attribute (ex. location, environment, do you want loved ones nearby, etc.)
  • information on funeral preferences
  • option to make it available for friends and family to see
  • available for all ages; parents can help their kids work though this if they would like (this seems impossible to imagine, but for parents w/ sick children, this could help them navigate the conversation with ideas and age appropriate language.
  • Can be updated at any time
  • somehow available for search by clinicians to so they know the options as well

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

This would be a 2-step process. I’d like to interview people that have already thought about their EOL experience to get an idea of the things they have considered (i.e. attributes) for their experience. Then interview folks that don’t have an idea but are interested, to get a sense of options for each attribute. In both cases, I’d like to also understand what people think when they hear EOL and how they would define it for their situation. Would like to cover various age groups.

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

Brainstorming on attributes/options that would be useful to define an EOL experience; identifying people that have thought about how they’d like their EOL experience to evolve so we can talk to them; examples of past EOL experiences that went well; examples of past EOL experiences that unfortunately didn’t well (ex. didn’t know what the person wanted and others had to decide); access to caregivers that frequently work with EOL situations (ex. hospice) that can speak to how things evolve.

Tell us about your work experience:

I have worked in design and healthcare, with industry experience in medical devices and pharmaceuticals. Also have engineering experience (in automotive industry). My passion is in healthcare and improving patient offerings across the spectrum.

This idea emerged from

  • An Individual

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Photo of Doug Wilson
Team

I like this Atiya. It sounds kind of Pinterest-esqe. People could share pics and videos that give ideas about ways to make it better.