It’s hard to bring up the topic of death in our everyday lives where we’re over-scheduled, underpaid and overwhelmed by the things we’re supposed to do, but aren’t able to get to. My small family has had two close family members die in the past three years. One was very open and communicative about the inevitable. The second wasn’t able to be.
As the survivor, you’re trying to make sense of the inevitable and hoping if you’re called to make decisions, you will make the process painless, dignified and what the person would want. The dying process is messy. It’s hard on everyone. It’s confusing. It’s painful. It’s the beginning of your grief.
We talk about our wishes a lot in our family, but our candid conversations don’t happen in most families and for all the candid conversations we’ve had, we have we still have very few things written down. If something unexpected were to happen to me tomorrow my family would be figuring everything out while in the midst of their shock.
I’ve been telling my family my wishes not so much because I care what happens to me, but because I want to alleviate the pressure they will feel when they have to make life or death decisions about me. When it comes to life and death decisions the stakes are high and the survivors aren’t always thinking clearly. Decisions that seem insignificant can have lasting effects and you often get conflicting advice from people who are helping you make decisions.
A friend recommended I read “Knocking on Heaven’s Door,” a book by Katy Butler about the implications of life and death decisions. Her book makes it clear we need to have conversations about our wishes with our family but also develop a network of people who can help offer advice when the (un)expected happens.
Katy’s family, like my own, found some of the most supportive people in unexpected places. In her case, the ex-girlfriend of one of her brothers and a woman who worked at a Chinese restaurant. From her story, and my own experiences, you’ll find there are people in this world who are able to comfort and fearlessly lead while people are dying and the people who love them are at a loss about what they should do. You just don’t always find them when and where you expect to find them.
You can’t prepare for every situation, doing so would prevent you from living your life, but there are things you can consider now. Here are a few things I’ve discovered.
The idea of slow medicine. Looking beyond quick-fix solutions to understand what is the best long-term outcome for the patient. Slow medicine takes into consideration the whole picture; the desires of the sick person, the likely outcomes of intervention and what might happen if there is no intervention. Katy Butler talks about this extensively in her book.
Death is not always a failure. An ex-hospice doctor said this to me when I really needed to hear it. I just hope the proper application of this phrase will stay with me as I go through the rest of my life.
Consider a death doula. Though we often think of doulas when a baby is being born, there is a burgeoning industry of Death Doulas -- those who help guide families through end of life decisions. I could make an argument this is a necessity when an unexpected, severe crisis happens and the family is unprepared for the problems they will have to solve. But, there is not an easy way to find them. That’ll have to be improved.
Hospice and Palliative care are a necessity. This is health, counseling and symptom treatment for the patient and family. You must generally be considered to be terminal or within six months of death to be eligible for hospice programs. Palliative care can be received by patients at any time, at any stage of illness whether it be terminal or not. These people are amazing.
Consider your digital assets. When you are planning what will happen to your physical and fiscal assets, you should also consider your digital assets. So much of our life is lived online it will make it easier for your family if you can come to a decision together about what should happen and how they can get access to your accounts. My pals John Romano and Evan Carroll wrote a guide book to help you decide what makes the most sense.
Ask for help with “Advance Care Planning.” That’s the term doctors use for making life and death decisions. If your doctor is not willing to have a conversation with you about advance care planning, you may want to consider finding another doctor who will. Here’s a great infographic that encourages doctors to have these conversations with patients. And here is a beautiful essay by a doctor who bravely asks the question, "what do you want?"
No matter your situation, there are people who are willing and able to help. I include this in my #fringedesign exploration because it is an important topic that we’re not often willing to discuss. But, as I know first hand, if we remove the stigma of talking about death, we can get to more productive conversations with our loved ones and help them execute their final wishes.
Discussing Designing for the Fringe on the 3D LILA Podcast.
Designing for the Fringe: Making dysphagia-safe carrots at home.
The presentation and my notes from my portion of the presentation at South by Southwest (SXSW). My perspective was mostly focused on the utilitarian purpose fo 3D printed food -- particularly for those with Swallowing Disorders (Dysphagia).
Dysphagia is the medical term for the symptom of difficulty in swallowing. Dysphagia brings a major life change. Advancements in the word of 3D printing open the door for more people to enjoy nutritious, fresh food.
A few notes about my submission to the Panel Picker for the 2016 SXSW Interactive festival.
A tiny home could make it easier for my mom to age near us (or for us to live near her).
The US transportation system falls short for the elderly. Understanding why can make it better.
The NEA focuses an entire issue on the arts and accessibility to celebrate the 25th anniversary of the Americans with Disabilities Act. *Swoon*
Stephanie Thomas is cur8able, curating clothing and lifestyle products that are accessible /smart/ stylish for people with disabilities.
A video game, Forget-Me-Knot, helps people understand what it is like to have Alzheimer's.
Headphones help those who are blind use the ATM. Watch and learn.
BrainDance is a collaborative project bringing together dance choreographers, neuroscientists, physicians, philosophers and people with Parkinson's disease to explore movement.
Despite multiple setbacks, Frida Kahlo did not live in the world of the disenfranchised. She lived as a goddess whose entire being is a work of art.
The dying process is messy. It’s hard on everyone. It’s confusing. It’s painful. It’s the beginning of your grief. Talking about it early will help the survivors cope.
The story of one shoe that expands to 5 sizes and last for five years.
Surfing the web, and this website, with a screen reader.
How the blind watch movies, TV and play video games.
Emily McDowell made empathy cards to say all the things that are difficult to say.
As your parents and loved ones grow older you start to notice subtle differences in the way they live their lives. These modifications generally come after something has happened.
Crisis Mappers Network, a large, active, international community of experts, practitioners, policymakers, technologists, researchers, journalists, scholars, hackers and skilled volunteers who are using technology, crowd-sourcing and crisis mapping to answer our humanitarian needs.
Through telepresence and a Segway-like robot, Beam helps those with disabilities see the world.
Can using 3D printing solve animal protection issues?
A wearable device that allows you to send messages with simple gestures.
The get-to-know-you card game for people you've known your whole life.
Personal experience helped a Boy Scout create a wearable to prevent Alzheimer's patients from wandering.
A 12-year-old makes a braille printer with Legos. In other unrelated news, I waste a lot of time watching TV.
Banana fibers solve a problem for 50% of the developing world.
Peter and Peregrine are advocating for children and engineers to work together to create solutions.
Lisa Russell speaking about creating empowering film narratives. No more sad documentaries!
Neil Brandvold speaking on conflict journalism and what it's like to be a witness to culture changing moments.