OpenIDEO LA Chapter End of Life Meetup Process and Introduction
At the OpenIDEO LA Chapter meetup, nine people gathered to talk about their experience with death.
We started the meetup by watching a few minutes of BJ Miller’s TED Talk “What really matters at the end of life” to contextualize why and where design thinking can be of use. Then after a brief description of the stages of design thinking, we discussed the challenge, challenge goals and how that fit into the research/empathy stage of design thinking.
People split into groups and discussed an icebreaker question (What would they bring to a desert island?) and when they seemed a bit more comfortable, we discussed Celeste Headlee’s “10 Ways to Have a Better Conversation” and gave them sample questions to ease into discussion about their experience with death.
People were given 20 minutes to talk and then as a group we synthesized the findings, talking about salient points and, in a later session, breaking concepts and stories down into general themes. It made sense to look at the themes as we look at life and death, and so they are broken down chronologically (in image) by where each would exist in the walk towards death.
One main issue that came about when we spoke about end of life care was that of the plan.
What do you say or do? How do you talk about it? Is it better to have a third party or someone close to the person nearing the end of their life?
Perspective: When participants discussed this there were many varying stories. For one person, her grandfather had made the decision of going into end of life care for his wife. He was pressured by the family because of the burden it was to take care of her, but in the end it was his decision and he made it when the time came.
For another person, even though her aunt had planned everything ahead of time and knew it was coming, in the end there is “no way to plan for death.” It was when the woman called her aunt for the last time that she was confronted with inadequacy. Her instinct was to say something positive, something hopeful, something untrue. We are not adept to deal with the loss that transcends hope.
When you have mere weeks to live, positivity seems fake and it is hard to think of the words someone would want to hear. Do you ask about their final life lessons because they would want their legacy to live on? Or do you not bring it up because they think so often of death, they needn’t any reason to be reminded of it? Do you reminisce on the good moments? Or avoid getting them upset and not mention it so they won’t be reminded of all the moments they will miss?
In our final discussion it was suggested that it may be a better idea to ask about a person’s wishes for end of life when they are healthy to avoid emotions of current illness or old age.
When someone dies, the mourning process starts, and funerals become the place where people start the grieving process. Why not celebrate life with whom they love while they are still able to contribute and are present?
In some communities there are societal pressures for people to act in a certain way when people die. To pound their chest in grief, or cry alone or wear certain clothes. We discussed how this affects the dying process and how (if at all) these constraints could be easier for those going through the process. Should each person be able to grieve in their way, or is the ritual of death and important rite of passage?
Perspective: One story shared by a participant was about a friend's son who was seven years old. He had a classmate, who had lost her mother a few months previously. The little girl was very sad, and that day didn't want to go outside for recess. Instinctively the boy went outside, picked some flowers from the garden, and gave them to his friend. This simple act was innocent, the vision of a child, sincere and pure. He simply reacted to what he was seeing and feeling, without thoughts of how others were going to react or how he was supposed to react. He just wanted her to feel better.
When he came home, he started to ask his parents some difficult questions. He didn't really understand what happened. And that day he realized for the first time what death was, and also realized the fear it is to lose someone.
This is a lesson many adults could learn from. When you are afraid of not saying or doing the “right” thing, instead trust your instincts.
Looking at this issue from various angles and different points of view, there is one dominant theme: the loneliness a person feels at the end of their life and the fear of dying.
We wanted to explore the emotional space of dying. What is your emotional space? What do you need to be comfortable in a situation like this? What are you last fears?
Most think that the most important things in this space are being at home, surrounded by the people they love, and being reassured that everything will be fine. But to do this, one must first be prepared to face it.
This process can be difficult so the combination of emotional comfort and emotional supportive space is a core aspect of consolation.
As people shared the emotions of the family came up quite a bit.
What needs to be said about someone? What would they like to hear? How can I create joy for them? Why is this so stressful.
Perspective: One participant talked about her grandmother. She had been taken prisoner in a German work camp during WWII and severely hurt her back. Over the next 40 years she would have 10+ back surgeries that all seemed to do less and less for her until she found herself bent at a 90 degree angle shuffling up and down the stairs in her two-story house.
She didn’t want to leave and when her children brought it up, she would refuse and shut down the conversation. She would rather burden herself with getting up and down the stairs and have her children support her with meals, showers, everything, than to move to a nursing home. It scared her, to leave the first place to called home after being stolen from her family home.
Her children, while still loved her, grew resentful and they started to fight within themselves creating a lot of stress. She eventually fell and broke her hip and had to be sent to a nursing home to rest. Not long after getting there she had a stroke and lost all ability to walk, talk and move.
This is not the way that anyone imagines how they will leave this life and their family. But these stories are all too common.
How can we create enough dialogue to prevent something like this?
The Physical Experience
With stories like the former, it is no wonder that the concept of the location you would die came up again and again.
Would it be a sterile hospital? The forest? How do you plan your last day(s)? What would it look like to redesign the physical experience of dying?
Perspective: One participant talked about when his mother died. She had been diagnosed with cancer and beaten it but it had come back with a vengeance and she had been given just a few months. She had just officially retired and kept coming back to the thought “this isn’t what I thought my retirement would look like. I thought I would be traveling.”
His family moved home to support her as she got sicker and sicker. He mentioned that she "died at home, thankfully.” That she and the family did everything they could to keep her out of the hospital, to keep her comfortable.
It seemed that people agreed in general that we shouldn't die in the hospital, with sterile halls and neon lights. But then why has this become the norm?
The Family’s Experience
During final discussion we talked about when the family's needs can be disregarded when the main concern is to help who is suffering. But the people who surround them also needs support in dealing with what is happening.
Perspective: One of the participants shared a journalistic piece that she saw about Gold Star Parents, which is a group of parents who have lost their sons and daughters to war. What they realized was that people need to talk about who they lost with others. With that in mind they created this group that helps others through the process and keeping the memories alive.
One military member shared a story from many years back; when he delivered the sad news to the parents of a soldier that died in combat they immediately invited him in for a coffee. He didn't go in thinking they wanted to be alone. But later he realizes that the parents just wanted to talk about their son. He regrets to this day not going in. He just didn't understand how important that was.
One of the participants shared, that his grandmother was worried that her death would break the family apart. She was aware of the importance and connection she made possible while alive in the family, and had that in mind until the end.
Don't be afraid to talk about the difficult things, because it can bring about true acceptance. And don't forget, in your pain, to be there for other's in the same journey. How can we make this transition easier?
The final perspective that was brought up again and again was about how someone is remembered. How we are remembered and what is our obligation as the living to that person?
Who was this person? How was their life? What happens to their digital life? How could artificial intelligence play a role in this?
Perspective: A participant talked about her grandmother. She had a rich history and had always wanted to record it in some way so the scraps of memories wouldn’t all be forgotten. She lived in a different country than her grandparents and it was difficult getting there but in her one of her last visits she sat down and started to asked her grandmother about the olden days. She was rushed by a family member and had to leave, but swore to get the entire story the next time she came back.
Her grandmother had a stroke and never spoke again. The story is gone.
There is so much sadness in the grieving for those that have passed. They want something to hold on to.
How can we make it so that people don’t lose the opportunity to hear and tell their family story? How can we hold on to them forever with technology and how is it that we already do (Facebook)?