A Gift of Grace: Winner of the End-of-Life Care Challenge

We are pleased to announce that The Action Mill's submission to the Health Care Experience Design End-of-Life Care Challenge was named Best Solution Focusing on Advanced Directives. (The Action Mill is the design consulting firm that created and runs the Death & Design project.) 

Our submission, A Gift of Grace, is a set of cards with prompting questions, activities, and phrases to help people comprehend the complex issues involved in end-of-life care, and determine their own specific preferences for that care. We designed A Gift of Grace to tap into existing social networks by providing a way for people to honor a loved one who is living with a terminal illness or is in hospice care, and for families or other tight-knit groups to have conversations about their wishes but also share and reaffirm the activities that make them feel most alive. Watch a detailed explanation of A Gift of Grace in our video entry below.

An entry video for the Catalyzing Communication about End-of-Life Care design challenge. http://healthcareexperiencedesign.com/eolc/ Created by The Action Mill and Dr. Karl Ahlswede.

The Action Mill team benefitted immensely from the deep knowledge of advanced care planning provided by Dr. Karl Ahlswede, who joined us in designing A Gift of Grace. Dr. Ahlswede is a former surgeon and one of the first to be given the specialty board certification in Hospice and Palliative Medicine. He provides unique services for advanced care planning based on a custom approach to establishing patient values, which we drew on heavily to design A Gift of Grace.

Update: Since we won the End-of-Life Care Challenge, we've run a Kickstarter campaign to create this product. Check out mygiftofgrace.com to find out more. 

We'll be featuring the other winners of the End-of-Life Care Challenge on Death & Design in coming weeks.  To view the other winners of the challenge, and all the submissions, click here. 

School of Death

"If the examined life is not worth living, then is death not worth examining?"

Cabinet Magazine has joined with New School philosopher Simon Critchley to launch the School of Death, “an educational institution dedicated to exploring the relationship between death and the examined life.”  

In the spirit of pop-up retail, the School’s inaugural offerings are being delivered in May at Family Business, a free time-share space in Chelsea, NYC for “people who have something interesting to say.”  The approach reaches back to the Greek origins of the word school  - scholē - which meant “conversations and the knowledge gained through them during free time.”

School of Death instruction is taking the form of evening and weekend talks accompanied by daily lessons handwritten on a chalkboard at Family Business.  Pictures from the May 7 opening and more can be found here. On May 16 Simon Critchley will lecture on “Learn How to Die” while workshops on the afternoon of May 18 will study suicide notes and the art of epitaph writing.   

To read/view more:

• Simon Critchley on the History of Death
• Simon Critchley, The Book of Dead Philosophers

Good Life, Good Death, Good Grief

“Death is normal.  We can help each other with death, dying and bereavement.”

These simple words open the website of Good Life, Good Death, Good Grief, an alliance of organizations and individuals working to bring more openness about death, dying and bereavement to Scotland.  Just two years old, GLGDGG already has attracted more than 600 members drawn from hospice providers, interfaith groups, the National Health Service, funeral directors, academics and everyday citizens.

Organized around broad aims, a vision and principles, Good Life, Good Death, Good Grief encourages member action that is “bottom up and locally relevant.”  As such, the site feels like open-source software for designing community engagement in death, dying and bereavement.  Underlying Good Life, Good Death, Good Grief’s organic structure is the rigor of a public health vision advanced by Professor Allan Kellehear, Professor of Sociology at the Centre for Death and Society, University of Bath.  Dr. Kellehear writes that we need to “take those first steps toward regaining  what was formerly unremarkably common – the community care of the dying and those living with loss. “

Good Life, Good Death, Good Grief Awareness Week is taking place May 13-19, 2013 with locally planned events throughout Scotland. Among the many offerings are Before I Die walls and a Death Café, project forms previously highlighted on the Death and Design blog (January 28  and February 25, 2013). Scotland’s Awareness Week takes place at the same time as Dying Matters Awareness Week in England, sponsored by Dying Matters.

Read more:

• Scottish Partnership for Palliative Care (the original convener of Good Life, Good Death, Good Grief Alliance)
• Book: Compassionate Cities. Public Health and End of Life Care by Allan Kellehear

Poppy's Funerals

Poppy Mardall founded Poppy’s Funerals “to help people take creative control of their funerals.” If that’s not bringing user-centered design to death, we don’t know what is.

Poppy’s simple cremation service offers something that is too often missing from end of life services: clarity and transparency. There is simple pricing and plenty of guides for navigating the legal requirements of dealing with the body as well as planning a meaningful ceremony.

Read more:

• Funerals: Where's the Meaning? by Poppy Mardall (Huffington Post
• 'I never wear all black’: Meet the glamorous 29-year-old funeral director shaking up the business (The Daily Mail)

Research Opportunity: Mournuments

​Here's an opportunity that may be of interest to our readers.

Provisions Library — an art and social change research organization based in Washington DC and Farifax, VA, invites proposals from creative social change agents for research projects in partnerships with DC institutions and communities. Provisions research residencies consider methods of inquiry, investigation, creation, and collaboration for art and public actions that investigate local and global social issues and themes.

One topic they invite proposals for specifically is "Mournuments (structures of death, mourning, remembrance)". The fellowship is in DC, for 2-3 weeks, with a stipend of $500 per week, plus travel and lodging expenses. The deadline is April 30.

Read all the details here.

Unfortunately none of our staff is at a point where they could take advantage of this wonderful opportunity, but we hope one or more of you can. 

This Developer’s Life

We’re fans of This Developer’s Life, a podcast that brings humanity, wit, and charm to the world of coding. The latest episode takes place over six months while the host, Scott, and his wife, Mo, recorded their experiences after Mo was diagnosed with cancer. They navigate what to say to their children when mom goes in for surgery and bring us along for the rollercoaster ride that follows uncertainty, pain, and healing. They disagree in front of us, share two sides of a very personal story, and remind us that while everyone’s experience is different and surprising, a little honesty and humor go a long way.

The Sympathy Project

​“For nearly every other aspect of our lives there are endless choices for self-expression. Yet, when it comes to illness and death, two occurrences not usually in the fold of our daily realities, there is little that exists outside of the traditional or the cliché. The Sympathy Project wants to change this.”

Andriana, the creator of the Sympathy Project, was dismayed at the lack of options for expression she found when planning her mothers funeral. In every aspect of the experience, from cards to caskets to the funeral home itself, she was disappointed that the words and design felt outdated and disconnected from what she was going through. Visit The Sympathy Project to find out how you can contribute designs, words, and ideas to create a language for talking about illness and death.   

"Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose."

— Steve Jobs in his 2005 Stanford University commencement address

Get Your Shit Together

After Chanel Reynolds lost her husband in an accident in 2009, she discovered first hand how difficult it is to deal with the details — from unfinished wills to checking account passwords — at the same time as someone close to you is dying. Her response was to create GetYourShitTogether.org, a site filled with solid advice and useful tips to help us all get things in order so that we'll be able to focus on being present when a crisis inevitably hits.

Living Life Dying Death

Living Life Dying Death is a book about conversations by Jennifer Collins Taylor. Filled with simple prompts and useful perspectives, it provides entry points into meaningful discussions about death and mortality. You can get a copy of the book here.

San Francisco Columbarium

​During the Action Mill's trip to San Francisco last week to attend Wisdom 2.0, we visited The Neptune Society's Columbarium, a kind of cemetery for the ashes of people who have chosen to be cremated. During a tour of the columbarium, which was built in 1898, we were struck by the deeply personal nature of what people chose to include in their loved ones' niches. From hot sauce to stuffed animals, personal notes to San Francisco Giants banners, each spot told a small story about someone who is deeply missed. And together, the space has a feeling of community; a place where families and friends can come to mourn and remember together. 

Before I Die

Before I Die is a project created by artist Candy Chang. From her project description:

It’s easy to get caught up in the day-to-day and forget what really matters to you. When I lost someone I loved very much, I thought about death a lot. This helped clarify my life, the people I want to be with, and the things I want to do, but I struggled to maintain perspective. I wondered if other people felt the same way. So with help from old and new friends, I painted the side of an abandoned house in my neighborhood in New Orleans with chalkboard paint and stenciled it with a grid of the sentence “Before I die I want to _______.” Anyone walking by could pick up a piece of chalk, reflect on their lives, and share their personal aspirations in public space.

Over 100 Before I Die walls have been created around the world, and a toolkit is now available. Visit the website to view Before I Die walls in multiple languages and get simple, easy instructions for how to create your own. 

Dying Matters

Dying Matters is a coalition started in 2009 by the National Council for Palliative Care, an umbrella charity working in England, Wales and Northern Ireland. The coalition's goal is to make dying, death and bereavement an accepted part of everyone's life by encouraging people to talk about end of life plans with friends and loved ones.  

Dying matters provides guides for planning your own funeral, help for doctors who want to improve how they talk with patients about their end of life care, and resources to help just about anyone interested in having better conversations about death and dying. 

Audio as the Realm of the Dead

Artist Victoria Estok created Audio as the Realm of the Dead as a memorial space for her hometown of Roosevelt, New Jersey. For one day, in May of 2007, 31 voices could be heard in Roosevelt Woods. These voices were collected from answering machines messages, home videos and interviews from an oral history archive. 

Read more and listen here.

A patient as teacher

In 2012, Martha Keochareon, a nurse from South Hadley, Massachusetts with pancreatic cancer, decided to make herself available to the nursing program at her alma mater. Ms. Keochareon invited nursing students into her home to ask her questions and learn first hand about caring for someone at the end of their life.

A New York Times article about Ms. Keochareon ends with a quote from Cindy Santiago, one of the two nursing students who visited her over the course of two months: “Who in her situation, to be like that, would call up and say, ‘Hey, I want to teach a student about my cancer?'”

A few paragraphs earlier, Ms. Keochareon's sister Ruth Woodward offers a possible answer: 

“I notice that every time that Martha gave of herself she received far more. In fact, she received a few moments of less pain and I suspect that she received life itself — a few more hours, even days, with purpose.”

We hope that this project prompts more conversations like this: about what we need at the end of life, and what we might wish to offer.

Read more:

• NY Times: As Nurse Lay Dying, Offering Herself as Instruction in Caring
• NY Times photo gallery

Passage

Passage is a game by Jason Rohner, created for a challenge that restricted game designers to a 256x256 pixel display and a 5-minute time limit. Rohner chose to restrict himself even further, and his 100x16 pixel game is has a lot more nuance than one might expect. We recommend that you play it several times to try out different strategies, and share your experience of the game in the comments below. 

You can download a copy of the game here.  (If you have any trouble installing it on your computer and you have an iPhone, we recommend the 99 cent version in the App Store.)

Salle des Departs

The doctors at the Hopital Raymond Poincare in Garches, France, decided that a family's last goodbye with a loved one shouldn't take place in a cold, impersonal room, so they commissioned Italian artist Ettore Spalletti, British sound artist Robin Rimbaud (known as Scanner), and American composer David Lang to create a morgue that feels like no other. 

"We try to treat the dead as we would treat the sick, with the same level of medical care."
— chief pathologist Professor Michel Durigon

"I was adament ... that I felt like this music should last a certain amount of time ... and then it should be over. And then, if you decide that you would like to stay there longer,  that's between you and the silence. Here's the contribution I can make, and when I've made that contribution, I should get out."
— Composer David Lang on RadioLab

Listen:

!

• The Last Goodbye BBC Radio 4

Death Café

Death Cafés are pop-up events created to bring together people for a relaxed, safe discussion about death "with a view to helping people make the most of their (finite) lives." Cafés are facilitated, but topics are wide-ranging. A simple set of rules (outlined in a guide you can download here) a space, and some coffee, tea and cake is all you need to set one up. 

Stories from the day hospice

To accompany Death: A Self-Portrait, Chrissie Giles ran a creative writing group at the Princess Alice Hospice. Her blog contains reflections and the work of some of the members of the writing group. 

Death: A Self-Portrait

Death: A Self Portrait is exhibition of art and objects that explores our complex relationship with death. This exhibition, at the Wellcome Collection in London through February 24, 2013, is based on the collection of Richard Harris, a former antique print dealer from Chicago.