Over the past five years the Engage with Grace: One Slide Project has been doing its part to start conversations about end-of-life preferences. Motivated by personal losses, Engage with Grace creators Matthew Holt and Alexandra Drane designed a single slide with five simple questions and invited the world to download it. To prompt your own reflections or share the tool with family and friends, click here.
I met Tamara (or Tammy) through the Philadelphia Quantified Self group that The Action Mill has been hosting at our studio every other month or so for the past year. I knew that Tammy used personal kanban which she learned by viewing our free webinar. Personal kanban has helped me and other Action Mill team members be more present and more ourselves from moment to moment and task to task.
I was surprised when Tammy told me that she recently placed “Die” in her kanban, a practice I had begun last year and shared with her.
The following is a Q&A I had with Tammy over the past week and the picture above is a photo that Tammy took of her personal kanban. Enjoy.
Question: How did you come to start using a personal kanban and how has it helped you?
I discovered personal kanban the first time I visited The Action Mill. I was visually intrigued and then when I began asking questions and learned it's purpose I was immediately excited to try it out. As someone with ADD and an additional memory issue, personal kanban's way of visualizing tasks seemed like something that could help me. The day after my visit to The Action Mill I went onto the blog and watched the web seminar on how to create your own kanban. I built my own kanban at work using just the basics at first and then tweaking it to better fit my job. I noticed a change in my work flow immediately; I always knew what I was working on, what had to be done, and if something was scheduled to be done soon. My boss even took to adding post-its to my kanban rather than having to send me emails. The positive reward of putting a post-it into the "DONE" section became almost addicting.
After seeing how well kanban worked for me in my professional life I decided to make a kanban for my home studio space. I broke the tradition a little by using frames instead of tape to make this kanban more visually appealing. As expected, my home kanban has been equally influential in promoting productivity. It helps for keeping track of creative ideas and making sure they get a fair amount of time spent and are ultimately completed rather than hopping from one project to the next and never completing any of them. It also makes boring home chores slightly more bearable because of the positive reinforcement of moving them into the "DONE" section, just like at work. Overall, as someone who is chronically forgetting tasks or appointments, kanban has helped me get a handle on my tasks and obligations and improved my productivity exponentially.
Question: When did you place "Die" in your Doing? How has it changed you and how you approach your day?
I added "DIE" to my kanban after the sudden and unexpected death of an acquaintance. I wanted a daily reminder that death is coming. I wanted to use this reminder as a tool to come to terms with my fear of death and the unknown it holds, but also to remind myself to actively live my life and live it positively. I hoped that perhaps also this reminder would stimulate me to get things done now and not wait until later, because there may not be a later.
Thanks Tammy for sharing a bit of yourself with us and our readers.
To see some of Tammy’s recent work check out her new website. Finally, please share any day-to-day approaches you use to stay connected with your mortality.
It’s not often that a college course description is inspiring but then again there aren’t many courses like It’s A Beautiful Life. This 3 credit, undergraduate writing course at Drexel University (WRIT304) in Philadelphia is described as follows:
“Many people are scared of death. However, the last days of someone’s life are really a time to celebrate that life. In this hybrid, community-based learning course, student pairs will join together to create a Life Journal book to help a hospice patient pass down their life experiences to their family and loved ones. Participants will show the patients that what they’ve done really matters, while learning how much their own lives matter as well. Students will be required to meet with their hospice partner in area hospice or home once per week for interview material.”
Designed and taught by Drexel faculty member Ken Bingham, the course matches students with individuals receiving services through Crossroads Hospice. The inaugural offering in Summer 2013 saw 11 students enrolled from a wide range of disciplines, including biology, English, nursing and psychology. Staff from Crossroads Hospice facilitated the first two class sessions to prepare students for being with individuals who are dying. Students then met weekly with their hospice partners to create Life Journals to share with family members and friends. Professor Bingham reports that hospice patients and their families enthusiastically welcomed the students, often preparing food for their visits. Although three individuals died during the course of the semester, participants reported that the learning experience was one of celebrating life. Exceptional bonds can develop quickly in the face of life’s limits, as evidenced by students continuing to visit their partners after the 10-week course concluded.
It’s A Beautiful Life will be offered again in the Spring and Summer of 2014. To read more about this community-based learning experience that opens up conversations about death and life across the generations click here.
Around the globe, human-centered design principles are being trained on inherently messy end-of-life challenges. Recently, two foundations – the Lien Foundation and the ACM Foundation – commissioned a healthcare design consultancy called fuelfor to re-envision inpatient hospice care in Singapore.
The resulting report, Hospitable Hospice – Redesigning Care for Tomorrow, generously shares 7 design concepts and 24 experience design principles that can spark action whether you are in Singapore, Philadelphia or Rwanda (Note: Rwanda was the first country in Africa to implement a stand-alone national palliative care policy – see this article in ehospice.com).
At the core of the vision is returning the dying process to everyday life by developing porous hospices – what they call Care Central - that become integral parts of neighborhoods alongside schools, religious institutions, stores and homes. But even more than the physical environment, the authors recognize the central role of human interactions in the dying process. As such they see volunteerism as playing a greatly expanded role in the hospice of tomorrow. Volunteers become emissaries who can cross boundaries and open up conversations about death and dying across the lifespan and throughout communities.
With offices in Barcelona and Singapore, fuelfor healthcare design and consulting brings design thinking to healthcare entities, governments, communities and individuals.
There is a line in Verlaine I shall not recall again,
There is a street close by forbidden to my feet,
There’s a mirror that’s seen me for the very last time,
There is a door that I have locked till the end of the world.
Among the books in my library (I have them before me)
There are some that I shall never open now.
This summer I complete my fiftieth year;
Death is gnawing at me ceaselessly.
Limits, a poem by Jorge Luis Borges, Dreamtigers, 1985
The Philadelphia area is emerging as a hotbed for creative thinking around all things death and dying. With a business degree from Drexel and an office in Yardley PA, Rachel Zeldin, founder and CEO of I’m Sorry to Hear, LLC, is part of the move to bring funeral planning into the world of social media. Her site, I’m Sorry to Hear, is designed to help people navigate funeral arrangements for a family member or friend, an emotional task that most people have no experience doing. As mentioned in an Inquirer article Zeldin envisions her website as a “Trip Advisor for funeral planning.”
"The thing to do when you are impatient...is to turn to your left and ask advice from your death. An immense amount of pettiness is dropped if your death makes a gesture to you, or if you catch a glimpse of it, or if you just have the feeling that your companion is there watching you."
— Carlos Castaneda, Journey to Ixtlan, 1972
August 8, 2013 marked Australia’s first Dying to Know Day, a time dedicated to conversations and community actions around death and dying. The aim of this inaugural event was “to encourage all Australians to develop new knowledge and attitudes about how to deal with death and bereavement and support each other at the end of life.” From Canberra to Melbourne to Tasmania, locally organized events included Death Cafés, Pub Conversations about Healthy Dying, and a forum on Goya and Ars Moriendi.
Dying to Know Day is just one of several creative initiatives advanced by the GroundSwell Project which uses the arts to bring about social and cultural change. Founding Director Kerrie Noonan reached out to the Action Mill regarding My Gift of Grace and the Death and Design website, further evidence of a worldwide groundswell to unhide death in life affirming ways.
"Death is the only wise adviser that we have."
— Carlos Castaneda, Journey to Ixtlan, 1972
“listen to people in their 80's. They have looked across the street at death for a decade. They know what's vital.”
— Advice from Patricia Lyons Simon Newman, 84 years old, the day before she died, shared on Twitter by her son, journalist Scott Simon
Here at The Action Mill we started Death & Design as our contribution to a nascent movement to unhide death and the dying process, to open up difficult conversations.
One of our first blog entries was about Martha Keochareon, a nurse from South Hadley, Massachusetts with pancreatic cancer, who invited nursing students into her home to ask her questions and learn first hand about caring for someone at the end of their life.Now Scott Simon, host of National Public Radio’s Weekend Edition Saturday, has opened the door even wider by using Twitter to share his and his mother’s observations with 1.2 million followers during the final days of her life. To read some of the tweets and learn more visit this link. Whether you find the use of Twitter for this purpose moving or profane, Ms. Newman’s wise instruction to “listen to people in their 80’s” is an open-ended invitation to face our own mortality.
Thank you to all 436 people who backed our My Gift of Grace project on Kickstarter!
My Gift of Grace is a game that helps people talk about death that we've been working on for the past few months. Our recent Kickstarter campaign raised over $41,000 to finish and manufacture this game. You can find out more, read media accounts and sign up for updates at mygiftofgrace.com.
“What really fascinates me is the idea of liminality: the joining together of two very different states. You have a kind of intensification of knowledge and emotion... I'm fascinated by ...the coming together of these disparate states of life and death, nature and culture. Cemeteries are the places that those kinds of meetings of the past and the future come to the fore.”
—Keith Eggener, author of Cemeteries, quoted in “Our First Public Parks: The Forgotten History of Cemeteries”
The Philadelphia region is home to an abundance of cemeteries with historical, horticultural and architectural significance. To name just a few, you will find Christ Church Burial Ground, the resting place of Benjamin Franklin; The Woodlands, with elaborate Victorian monuments; and Eden Cemetery, America’s oldest African American public cemetery company and a stop on the National Park Service National Underground Railroad Network to Freedom. In this venerable company, Laurel Hill Cemetery is notable for its imaginative efforts to entice the public into its 78 acres along the Schuylkill River through live music, historical tours and lunar strolls. Intriguing entries in the Summer 2013 Calendar of Events include a Concert Atop the Crypts, Cinema in the Cemetery and the 5th Annual Service Car and Hearse Show. A recent grant from the Pew Center for Arts and Heritage will help restore nonprofit Laurel Hill’s historic pedestrian entrance on Kelly Drive encouraging even more interactions in this liminal space known as Philadelphia’s Underground Museum.
“Perspective in photography … is an extension of one’s thoughts, feelings and emotions in terms of the subject being shot.”
We are delighted to congratulate Joanna L. Hart, MD and John Hansen-Flaschen, MD of the Fostering Improvement in End-of-life Decision Science program at the University of Pennsylvania for their winning photography project called “The View from the Bed.”
With patient and family permissions, Dr. Hart and Dr. Hansen-Flaschen plan to place a stationary, remote-activated camera with a wide-angle lens at the head of patient beds in the Medical Intensive Care Unit, gathering images from the perspective of the patients. Hart and Hansen-Flaschen believe that “Capturing the emotions of family members will serve as powerful motivators to individuals who have not considered or completed advanced care planning.” The photos then will be used as the centerpiece of an informational campaign to promote advanced care planning among the public. Experience the power of such a project here.
(Here at the Action Mill we can’t help but notice that Philadelphia is home to two of the three winners of the national End-of-Life Care Challenge: Catalyzing Communication about End-of-Life Care — Penn’s The View from the Bed and Action Mill’s very own A Gift of Grace.)
“May all beings everywhere have their healthcare wishes known and honored!”
— Michael Kersten, Master of Public Health Candidate at the University of California Berkeley and former Hospice Counselor
Here at the Action Mill our hearty congratulations go out to Michael Kersten, Overall Winner of the End-of-Life Care Challenge: Catalyzing Communication about End-of-Life Care.
The California HealthCare Foundation put forth a design challenge “to get people aware, thinking, talking, and taking action” to make their end-of-life wishes known. Michael’s winning entry envisions tapping the power of social networks on Facebook (FB) to accomplish this goal. A visually appealing app designed for FB will allow grassroots champions of advance care planning to invite “friends and family members into an advance care planning network.” This approach will leverage existing Advance Care Plan (ACP) formats and propagate new ACP networks by asking individuals who complete a plan to start a network of their own. Check out the design details of Michael’s project here.
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.
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.
"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:
“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.
- 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 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.
- 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)
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.