Page 1


This book was written and designed by Matthew Ellery Barber. This book was edited by Ian Bourland. This book was produced as an artifact of the Products of Design MFA program at the School of Visual Arts, 2014.

7 SPECIAL THANKS TO For Guidance... Allan Chochinov Andrew Schloss Sinclair Smith Charlotta Hellichius Ian Bourland Tove Eriksson Jesse Jacobsen Ilene Blaisch John Thackara For Support.... Lauren Griswold Jane Barber Jack Barber Andrea Engelstad My Fellow Classmates Gabrielle Kellner Marko Manriquez For Inspiration... Marilyn Hahlbeck



































-Woody Allen


Woody Allen, Without Feathers: Death (A Play) (New York: Random House, May 12, 1975) Pg.



Woody Allen’s comedic insight provides

Death is the final chapter in our lives

an accurate summary of our society’s

and is a time of incredible growth for

perception towards death and end

the deceased as well as bereaved, and

of life. Looked at as taboo in western

should be celebrated as such. What

cultures, death is often neglected until it

then stands in way reaching this ideal?

is imminent and inescapable. This thesis hopes to investigate how Western society views death as an

dying in a digital age looks and how it

end, as a consequence of a life, as

affects the way we live today.

something to try to escape, postpone or ignore. This fear of talking about death becomes increasingly apparent when it enters a commercial setting, by way of the condolence card. The language we use to express our condolences skates around the word death with a lexicon of stand in language like loss, memories and passing. What if instead western society viewed death as a culmination of experiences, as an impact on the world, and the beginning of a legacy?


15 During



grandmother suffering









stalemate, forcing state run agencies to


step in and ultimately make the decision


for us. Due to these frustrations, there

various complications involved with

became a lack of financial support

this disease. The following months

needed to secure proper care in a

catalyzed my initial inquiry into the set





of questions at hand.




there was an embrace of new and Specifically, attempts at navigating

innovative avenues for communication.

the topography of a fast approaching death was difficult for myself and my

Throughout this journey, I was in

family. This period leading up to my

a unique position of being able to

grandmother’s death was the first time

experience her passing in an intimate

we had to deal with any prolonged

yet completely detached interaction

medical issues as a family unit.

through the use of new technologies

Communication slowly broke down


within this family unit and frustrations


began to mount and a number of

lived emotion. It was intriguing and

issues within this hardship presented

discouraging at the same time. Relating



this experience to others triggered

expected learning curve, working with

strong opinions surrounding online

the doctors, the hospice care, the social


workers and not least, our grieving

values and positive speculation around

extended family just amplified any

the future of death and dying.













specific problem that arose. Second, caring for someone with a terminal

For example, I immediately noticed that

illness, especially one suffering from

during my grandmother’s end of life

dementia is really an ecosystem within

was that a distance of close to 1000

a larger, more complex socio-economic

miles between myself and my extended

system. As my grandmother’s illness

family became all but obsolete during


these few months. I was experiencing




surrounding this larger legal, medical







passing family





internet updates,

at times quite supportive and others

pictures, phone calls and Facetime,

incredibly destructive for my extended


family. Lack of any sort of preparation

connectedness is very current topic,

for such situations led to a familial

but experiencing death within this







17 context was something unique and new

artifacts live, what sort of impact might

to me and my peers. Death, something

they have, and the consequences of

western culture traditionally avoided

this pivot from analog to “digital death.”

discussing, become easier to talk about through these less formal modes of communication. Might this be the new normal in cultures where many live to old age and many in connected locales? Are the artifacts created




from friends and family unknowingly a permanent record that will live on for loved ones who have passed? In the pages ahead, I will investigate this evidence of digital natives embracing the fact that these artifacts can be harnessed and what value can design can add to this conversation. By looking at how disruptive technology such as social media, the “internet of things” and permanent “cloud” information storage affect the relationship digital natives currently have with death, we might begin to see new possibilities within this shifting landscape. The next decade will witness what happens then when digital natives reach an age where they are dealing with their own end of life, and deciding what sort of artifacts will they choose to live on even after they die. Furthermore, digital natives have a unique opportunity to define which stakeholders will be developing the future of these artifacts. This thesis will speculate where these



Death and dying have never been an

When I was fifteen I injured my eye

interest of mine. In fact, far into this

playing soccer. The diagnosis was that

thesis investigation I still struggled

I had a Hyphema, which in layman’s

to talk about death, to stand up and

terms is an interior rip within the

present my work without stumbling over

chamber of the eye. The interior of the

the word. I often reffered to death as “the

eyeball fills with blood and as a result

end”, “passing”, “loss” and “leaving”,

the light cannot refract through the lens

all the while studying and preaching

and hit the retina. No light equals no

the fact that this is the reason death is

image. When it happened, I thought I

looked at as taboo in western society.

was going to be blind. I was scared, I did not understand, and I could not see.

I am slightly obsessive. I often become

I began to consume any information

deeply involved in hobbies and things

I could while I spent the next three

I find intriguing, and death is neither of

weeks recovering. This understanding

the above. My interest in the idea of

gave me the courage to internally deal

death comes from something deeper

with the lack of vision in one eye, and

and more ineffable, something that

the fact that I could not leave my bed so

is frightening until you understand it,

as to not re-tear the healing retina.

or begin to grasp some of the ideas around it.






grandmother has been diagnosed with dementia, and put into an assisted


21 care home. The feeling of fear and not

stakeholders involved in the passing of

understanding resurfaced, the same

an individual, their role and contribution,

feeling I had when I had injured my

and who in this web of individuals

eye. Again I turned to information to

are interconnected. I also chose to

understand. The promise of scientific

look at the important human factors

fact is that anyone willing to put in


the time and effort can eventually

traditional five (now possibly six) steps

understand the “what” and “why” of a

in grieving, and the emotions involved

problem. This was different.

and how we traditionally deal with those




emotions. My research directed me The science behind Dementia and

towards the fact that like the science

Alzheimer’s has not yet firmly landed as

behind dementia, new technologies are

fact, yet there was another underlying

changing the landscape of death and

factor that I would soon find even more

dying in real time, but unlike science,

consequential than the disease itself —

we have a clearer understanding of

the human system surrounding death

technologies and have the opportunity

and terminal illness in western society.

to take advantage of them. The emotional and social capital that new

The science lead me in many directions

technologies are able to provide have a

of inquiry but the lack of clear facts

powerful effect on how we will deal with

and shifting opinions surrounding this

loss and death in the future.

terminal illness lead me to explore the human system surrounding death for


two reasons. The first is the personal

chronicle this journey of thought through

need to cope and deal with something

research and how we look at existing



technologies and their effects on how

that frightened me. The second, and

we as a society view death. This thesis

possibly more important, is the fact that

acts as that pivot in my understanding

the system surrounding death (family

of my own life and eventual death,

and friends, the entirety) of a life lived

and those who live within this system.

is a dynamic and accessible system to

Using this information and pairing

observe and gain understanding and,

it with technological advancements

ultimately, to improve upon.

with the intended outcome of greater








understanding and security in and So what happens within this system

around death is my personal goal of

and who is affected? I set out to

this thesis. And thus, the beginning of

interview and research the many

The End.





The goal of this thesis is to investigate

that pervaded and effected even those

the landscape of death and what it

existing outside of it.

means to all the stakeholders involved. Mapping




I began by asking how might we re-

understanding what motivates them,

humanize our current end of life care

and their various influences within

system by re-framing an intervention

the system will defined a number of

directed not towards the patient, but

avenues down which an appropriate

rather those affected by their passing.

intervention would be most successful.

This thought of designing towards a patients family and friends, their lawyers

As I hope to have clarified above, this

and accountants, their lovers as well

thesis began because I saw a need to

as their enemies is a powerful pivot

assist in a system I thought broken. I

from the patient-driven care system

witnessed how difficult end of life care

we turn to currently. Understanding

was both for both my grandmother

this ecosystem of relationships is a

and for those affected by her suffering

fundamental step towards preparing

and passing and thus, the need to

an intervention for loved ones who are

investigate this problem space.

aging and who will likely need care in the years to come.

The bright-spots within this system was the care given to my grandmother. It was professional and effective. While overall the system did do its job efficiently, there was a sterility and detachedness



As new technologies have been paired

and we as a socieety can witness how

with cultural rituals around death,

these new technologies are affecting

there is a changing landscape within

our lives. These technologies have the

this conversation. The early adopters,

power to shift our thinking, points of

those who have a digital “footprint”

view and human habits. Looking ahead,

are using these technologies to ease

I predict there will be drastic changes

communication and self identify at the

in the way we view death and much

same time. Likewise, Boomers have

of that change will be due to these

a significant stake in the digital world.

products. Therefore, an audience with

This generation has an understanding

enough understanding of this digital

of these new technologies but yet

environment is who this thesis will cater

are on the edge of what I see as the

to. Likewise, as technologies evolve, so

real audience for this project. Instead,

to will the audience for this thesis.

Millenials and younger, who have essentially grown up with technologies

The true generation of “digital death”

are who I see as the real audience,

is still several decades out, but as we

those which I will define as Digital Natives.

observe the early adopters within the Boomers as well as the Millenials, we

These technologies include social media

have an increasing idea of who this

outlets, digital “breadcrumbs”, and the

will affect and its potential implications.

quantified self offerings that are curently

These implications are derived namely

available. A little bit of self reflection

from the disruptive communication and


29 the development of an online self that

time, and it could be argued that any

these technologies promote and this

advancement within technology would

entities independence from a physical

then instantly switch what we think


of as Digital Natives now to what our definition is of a Digital Immigrant. Does

The definition of digital has many

someone born post-1989 who is not on

implications in today’s world and likewise

social media at this point then not a

has an impact on the idea of digital

Digital Native? This is where a further

natives that this thesis explores. For

distinction may be applicable for the

example, the discourse around digital

scope of this thesis but currently I am

natives varies depending on the context

using this definition as a baseline for

and application. Definitions vary from

my research.

those who are comfortable and accept digital devices, to the “net generation�, including all of those who were born later than 1989, to a more nuanced view of those persons who understand the value of digital technology and use it to seek out opportunities for expand this knowledge. How then does digital death function within this definition? For this project I am going to focus on two audience segments I define as Digital Natives and Digital Immigrants. Digital Natives are those who have grown up in an era of social media, computers, and cellular data plans, whereas Digital Immigrants are






transitioned from an analog world into that of a digital world and have evolved with technology rather than being born into technology. Of course this distinction is constantly evolving as technology changes with



Research for this project began as an

within my early informal inquiry and

investigation into the landscape of end

it became evident understanding the

of life care in Western society, gathering

motivations of the terminally ill was a

insights from family and professionals

key responsibility for the patient care

from Europe and the United States.


Mapping out the stakeholders involved

These professionals, which include

and defining who to speak to was

hospice care, nurse, or often primary

an essential first step into moving

care physician has the most direct

forward to the interviewing process. I

contact with both the patient and

began this mapping by interviewing

their families throughout the process.

my family about my grandmother’s

Their role in synchronizing information

care and informally observing where the

gathered and translating it to an easily

tension points for them became evident.

digestible summary for patients families

These tension points acted as a catalyst


towards investigating their causes

make them the most humanistic and




empathetic lever withing this system. This first investigation began with both

In order to understand further this role,

informal and formal interviews with

a round of primary interviews were

hospice workers both on the patient

conducted within the medical care field,

side as well as the relations side of the

including two hospice professionals,

terminal care industry and progressed

a primary care doctor as well as a

to doctors, lawyers and social workers.

call nurse. A conversation with Tove


Erickson, a private hospice care provider





identified as one of the bright spots

based in Stockholm, Sweden follows.

32 Interview — Tove Erickson 9/24/14 How did you become involved in the hospice care profession? I have a background in development and international studies at IR. I became a practicing hospice care worker in Stockholm Sweden. at a semiprivate care service primarily for employment, however, was interested as my grandfather had previously suffer from Alzheimer’s. How would you describe hospice work in Sweden compared to say the state of care throughout Europe? In Sweden there are a few different levels of care, most people use a home service, however, some do need some extra support. Generally patients are ages 70 - 90 years old. Thirty years ago there was a shift towards staying at home and that sort of changed how care has been provided since. The system is funded by the government but the company is private. Healthcare is provided by the state. How often do patients families interact with you? It helps if the families are very pushy. For the company it is a really important balance, the more hours, the more money. A lot of interaction with families are done by the supervisors. Usually the families are all at home, we never see them. They are invisible to us. Your personal connection with the patients do not extend to their families? As a nurse I do not act as the main contact person for the family, however, if something had happened I would, or if they happened to be there. Occasionally there were good relationships and I would meet their families. What is the importance of establishing a personal connection with your patients? I’ve learned that personal does not equal comfortable. There is a huge turnover on staff at hospice care, and patients often have a lot of visits from

33 33 strangers. Therefore the patients are very nervous as they do don’t know who is coming and it is hard to establish a close connection. How do you as a care provider deal with the notion that your patients will soon pass? Instead of getting attached to people, we focus on trying to keep the care consistent over forming personal relationships. The staffing has a lot to do with this. The care providers are mainly women who work in it, paid nothing and then come home and do the same thing. When you come to someone who is old, and mentally unstable who just wants to tell you their problems and their stories, you become their counselor if you get to attached. Do you see any bright spots in the hospice care world? It is quite heartbreaking to be honest. But, I just came back from India where elderly are celebrated and that actually was beautiful. The elderly were not sent to hospice or left alone, they often lived with their extended families. Maybe looking towards other cultures to learn would be helpful for your thesis. If you could place yourself in your patients shoes, what do you have to look forward to, what makes your day? Seeing my family, and personal interactions, telling stories and feeling purpose. Having something to look forward to is something I would look forward to.


Tove Eriksson

35 In short, this interview solidified both the roles and the social structure that is being adopted across the Americas and already established within




Erickson established the importance of emotional well being, especially when working with the terminally ill. Emotional





significant factor on how patients deal with the last moments of their lives. From a patients perspective having something to look forward to gives them drive and a hope in their final days, and this is where their family and hospice workers often either excel or fall short. How much can this affect the patient’s physical state is debated, but studies have shown that their emotional well being is measurably affected by purpose.




We think too much about age in terms

have grown throughout our lives, it is

of primary growth: a linear trajectory

natural to re-frame death as that final

from birth to death, graduation to

step of growth in our lives rather than a

retirement. We think of it in terms of

state of regression.

increasing figures: height, weight, bank account, pension, age. Secondary

A dying individual’s approach to death

is more subtle and impossible to

has been linked to the amount of

measure. It’s a swelling of thoughts,

meaning and purpose a person has

a slowing of limbs. And its not only

found throughout his lifetime. A study

sentimental and internal. In a way,

of 160 people with less than three

our bodies themselves measure and

months to live showed that those who

archive the seasons of our lives.1

felt they understood their purpose in life or found special meaning, faced

The above sentiment introduces us

less fear and despair in the final weeks

to the idea of purpose, or growth, that

of their lives than those who had not.

continues all the way to the end of our

In this and similar studies, spirituality

lives. Is a successful death really about

helped dying individuals deal with the

a death with purpose? This question

depression stage more aggressively


than those who were not spiritual..2




Eriksson lead me to investigate what the idea of having a purpose at the end

To understand how care linked with

means. When we consider how we

purpose defines the end on ones life,

1 Marie Peters, Nikaela. "Slow Growth." Kinfolk Oct. - Nov. 2013: 13. Print. 2 Santrock, J.W. A Topical Approach to Life-Span Development. Web.


39 the obvious transition was to turn

stages of grief that have since been

towards the psychology surrounding

applied across multiple practices and

dying. Within this space stands the

industries as a coping framework.

well known writer and psychologist

Kübler-Ross argues that terminally ill

Dr. Elisabeth Kübler-Ross. Kübler-

patients often lose purpose when they

Ross’s book, aptly named On Death

are held up in one of these stages of

and Dying and her follow up Death:

grief and lack the support and direction

The Final Stage of Growth remain

to move through this.

influential sources for understanding how various societies live with idea of death. Her reflection on the hospice care industry while writing these books still ring true today. Her point of view is based on the assumption that most of us die in a hospital, in a dehumanized state that does not nurture the sense of purpose terminally ill patients need. “The hospital, as a depersonalizing institution which is not, by definition, set up to meet the human needs of people whose physiological condition is beyond the hospital’s capability for successful intervention; these patients represent a failure of the institution in its life-sustaining role, and there is nothing in the system that provides for human nurturance to the soul when the body is beyond repair.”3 This is where the need of a support system outside of the institution becomes evident, both for a patient as well as for those stakeholders within this system. Kübler-Ross uses this as an argument to introduce her now widely used five 3 Death: The Final Stage of Growth, United States: Simon & Schuster. (1975)



Denial — As the reality of loss is hard to face, one of the first reactions to follow the loss is Denial. What this means is that the person is trying to shut out the reality or magnitude of their situation, and begin to develop a false, preferable reality.

Anger — “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?” Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Anger can manifest itself in different ways. People can be angry with themselves, or with others, and especially those who are close to them. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief.

Bargaining — “I’ll do anything for a few more years.”; “I will give my life savings if…” The third stage involves the hope that the individual can somehow undo or avoid a cause of grief. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Other times, they will use anything valuable as a bargaining chip against another human agency to extend or prolong the life they live. Psychologically, the individual is saying, “I understand I will die, but if I could just do something to buy more time…” People facing less serious trauma can bargain or seek to negotiate a compromise. For example “Can we still be friends?” when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it is a matter of life or death.



Depression — “I’m so sad, why bother with anything?”; “I’m going to die soon so what’s the point?”; “I miss my loved one, why go on?” During the fourth stage, the grieving person begins to understand the certainty of death. Much like the existential concept of The Void, the idea of living becomes pointless. Things begin to lose meaning to the griever. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and sullen. This process allows the grieving person to disconnect from things of love and affection, possibly in an attempt to avoid further trauma. Depression could be referred to as the dress rehearsal for the ‘aftermath’. It is a kind of acceptance with emotional attachment. It is natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation. Often times, this is the ideal path to take, to find closure and make their ways to the fifth step, Acceptance.

Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.” In this last stage, individuals begin to come to terms with their mortality or inevitable future, or that of a loved one, or other tragic event. This stage varies according to the person’s situation. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief. This typically comes with a calm, retrospective view for the individual, and a stable mindset.1

1 Santrock, J.W. A Topical Approach to Life-Span Development. Web.


Ilene Blaisch

45 The common acronym for these Kübler-

community, however, the framework

Ross’s framework is DABDA, which is

has it’s fair share of detractors. Within

derived from the five steps outlined

the field of psychology, Kübler-Ross’s

above. This framework acted as a

hypothesis lives as a loose guide and

strong affirmation to the early insights

not a proven treatment option for the



greiving process. Likewise, the thinking

conducted with my extended family and

behind these steps have since become

their reflection on my grandmother’s

dated. At this point in my research

passing. Additionally, this framework

there was a need to cross reference

helped illuminate a gap that was

these findings into the psychology

evident in the end of life care for my


grandmother that was experiences by

currently working within the field of

those around her. Kübler-Ross places

grief counseling. I sought the help of a

much of her emphasis on the lens of

clinical grief counselor who specialized

communication, both interpersonal and

in focusing on bereavement both

intra personal. Instances of breakdown

with terminal patients as well as their

within the social family construct I

families. A conversation with Ilene


Blaisch follows.






death became more understandable as I began to categorize within these five steps. Likewise, as this framework provided clarity towards what I had experienced, it also define levers that could be designed around. This research marked an important pivot which shifted the scope of design intervention




offering towards a more psychological driven design space. How might we use the grieving process as a lever for change? While Kübler-Ross’s work provides a new framework for dealing with the idea of death, it still lives on as a hypothesis. Her five steps have been adopted widely within the grief




46 Interview — Ilene Blaisch, CSW 10/08/14 How has the psychology surrounding death has evolved the past 30 years you have been in practice and if you could speak to that to open this conversation. Our society and culture has moved so far away from dying as a natural phenomenon. People have busy lives, families are separated. Older people are put away into homes, this is very different, and a new phenomenon. We are globalized in a way where we all live so far away from each other, it becomes more stressful to think of that. This all on top of the fact that you or someone you know is terminally ill. Tell me about your role in the industry as a grief counselor, what do you handle and where do you live in this industry? I mainly work in with grief counseling currently. I have worked in a college setting for over twenty years where I taught and lead the campus bereavement groups. In doing so I have worked with hundreds of people who have lost of a loved one due to death. Grief is not only an emotional an psychological experience, it is very physiological, how the nervous system can hold this and cause further problems after the fact. Can you plan for grief? That is a good question. A sudden grief produces a much bigger trauma to the system, even people who do prepare they can seal themselves off. The trauma is greater and grieving cannot happen during the trauma. There is a notion of complex grief, the context of the grief can influence the grief, so in a way the answer is both yes and no. What brings the majority of people to your practice? Military families, bereavement. The most common problems that come through the door are depression, anxiety, and relationship problems.

47 47

How have you seen the industry change in your time working what was the cultural change? Over the last 20 or 30 years we have in the bereavement field followed the 4 or 5 stages of grief, in fact everyone adhered to it. Just recently it has become widely recognized that this was a mis interpretation of the grieving process and it is not a linear system. In fact they have added a new stage in grieving that includes yearning. An even newer concept in bereavement is known as continuing bonds. It used to be in the old days that when someone dies, you needed to get over them, and move on. With continuing bonds, you do not end your relationship with the person who has died but you incorporate that in a different way. Ultimately you want to free up so you can connect to other significant people. Have you noticed technologies affecting the bereavement process? Part of me resists the new technologies that are affecting grief. All of us have experienced many kinds of small, medium and big traumas in our live, whether be developmental, environmental, that hasn’t been worked out and it gets caught in the system. When therapists work with something it is very raw and you find it in yourself you get upset. I don’t think technologies can capture this. What keeps you up at night? Pathologizing of natural phenomenon. It bothers me that I have to be in that system. That and giving yourself the time to step outside and allow yourself some time to step out, before going back into handle some emotionally draining conflict. You start to train yourself to observe mindfulness. By observing your thoughts that way you have designed yourself out of the system. Be curious about it. Consciousness around this frees up the neural pathways.








around death resulted in two distinct

social media networks in a hacked and DIY manner.

insights that helped influence the direction this thesis began to take.


Specifically ideas around mindfulness,

bereaved a platform to transform

derived from the writings of KĂźbler-

relationships, keep hold and move on.

Ross, as well the more modern

This construction of new connections



can be most easily observed with the

Continuing Bonds Theory, addressed

social platforms such as Facebook,

in the interview with Ilene Blaisch.

Instagram and Twitter, but can be







seen across industry and mediums Continuing Bonds is a grief coping

with passive and active digital data

theory that emerged in the mid 1990’s,


and is defined as a therapeutic approach




person maintains relationships with the deceased. Only recently has it received empirical attention as a mode of mourning and grieving. This idea is becoming more prevalent due to the rise in online and social media in the past decade. Users have informally started adopting the main principles within this theory by utilizing existing


51 “Since the self is a “collaborative

comes the act of “coming to terms”

manufacture” between performer and

and reconciliation for the soon to be

audience, authorization must be a

deceased. This is where the idea of

collective act. Individuals cannot be

continuing bonds and the ease of this


the sole arbiters of their online identity.

using new technologies essentially

The idea of an online self, one that

allows the individual to seek to

exists beyond the physical life of an

repair the relationship with the living

individual is a powerful new medium

by expressing regret or asking for

within the realm of the psychology of

forgiveness. Although not a linear


process of grieving as once thought, the progression through Kübler-Ross’s

Facebook users mourn online to

model in an important framework

remember a loved one who has passed


away, to connect with the deceased

through continued bonds theory. This

community of friends, to honor the live

theory lives within the world of the

lived by the deceased, and to receive

bereaved at the moment however,

support from and give support to other

this idea if embraced by those living

Facebook users.2

has strong promise to shift how we as




a society approach death. One very Similarly, technologies present a new

key factor in this shift is the coming

flavor of communication within the

to terms and thining of our own death,

deceased relationship with the living.

memento mori.

The permanence of online record can allow the deceased to influence and “live on” through messages, images and curatorial pursuits. The idea of this self we leave behind to interact with and tell our story to an audience can be looked as an extension on our person, and the consequence of this digital Dopplegänger. Going back to Kübler-Ross’s five steps of grieving, often with acceptance 1 Davis, Seider, & Gardner, 2008, p. 1086

2 Brubaker & Hayes, 2011: Carroll & Landry, 2010; Getty et al., 2011; Hogan & Quan-haase 2010; Stone 2010






accepting this we can really focus on

Latin, is the phrase “remember you



living and preparing for that eventual

will die”. Memento mori, mentioned

end and setting the stage for growth.

briefly in Kübler-Ross’s work, is a

Who better to embrace such a shift in

conscious pivot within my research

attitude towards the end of life than the

and prototyping practic from designing

Baby Boomers? This generation has

around death to designing around life.

defined the socio-economic landscape

This also implies a shift in audeience

for their entire lives is now reaching

for these design solutions from the

an age where they will profoundly

patient to a more accessible audience.

influence how society will look at death

Those both living and mindful of their

differently in the years ahead.

own end became a new audience to test and prototype offerings for this

Economist and journalist Dan Kaldec

thesis. A modern interpretation of

writes extensively about the boomer

mindfulness, of being self aware, is


parallel to the Latin idea of memento

American socio-economic policy. In

mori. By allowing oneself to step back

his essay about the shifting attitudes

and observe their life objectively, we

of Boomers and their openness to

are able to realize what Kübler-Ross

embracing a more mindful approach to

was getting at with the idea of death

their end, he postulates:





as the final stage of growth. In order to appreciate that final stage as growth,

Boomers don’t see [death] that way.

one first has to be aware that we will

To them, a good death is more about

eventually have to face death. It is with

a good life. When they can’t have that


Michael Hebb

55 any longer, it’s time to pull the plug.

towards more open communication

This will be the first generation to

about death by Millenials, coupled with

broadly eschew painful life-extending

a rising sense of awareness around

procedures and make the most of

one’s life being seen among Boomers

palliative care to live better in fewer

creates an opportunity for new services

days, and then die with dignity. The

and technologies to filter into society.

generation that didn’t trust anyone over

These findings have further defined

30 has turned its thoughts to dying—

the audience or early adopters as

and how to do it, like everything else,

those who see the opportunity to utilize

on their own terms.1

these new tech tools to gain a deeper understanding of their own lives and

Living a more mindful life has been

those in their circle. This raises the

gaining momentum in the past decade

question, than, of how the advent of

just as barriers in discussing end of

life logging applications, quantified

life are being lowered. For example,

self, or data-mining wearables be tied

Boomers are already beginning to

back to the idea behind memento


mori, and how can those using them




forums that invite discussion and open


discourse surrounding death. These

affected? Doctors and health care

online forums have really caught on the

providers increasingly suggest such

past few years, starting with the “death

devices to help them and their patients

cafe” series and popular blogs such

understand their physical needs. At

as among

the same time, these doctors may be

others. Similar self organized meet ups

unknowingly introducing

are becoming popular not only with



Boomers but also with Millenials.












passively accepting a self reflective and similar service

and inherently mindful medium while

platforms that encourage Millenials

at the same time creating a lasting and

to discuss their own death with like-

digital legacy of information. With this

minded dinner partners have gained a

convergence in mind, we can begin to

strong following in the past three years.

draw a parallel with how mindfulness

Michael Hebb of the program Let’s

in the traditional sense can utilize new

Have Dinner and Talk About Death

mediums to embrace continuing bonds

sums up his platforms [Deathoverdinner.

theory when dealing with grief and the

org] goal on the facing page.2 A shift

consequences of such mediums.

1 Kadlec, Dan . “Business & Money.” Business Money A Good Death How Boomers Will Change the World a Final Time Comments. Time , 14 Aug. 2013. Web 2 Adams, Michelle . “This is the Most Important Dinner Party You’ll Ever Attend. Time , 14 Nov. 2013. Web




One of the consequences of these


new mediums is what has recently

influence from cultural and social

been dubbed as “big data”. Big

stakeholders is an evolving issue. What

data is a vague term for a massive

factors are the strongest in forming a

phenomenon, but the “big data” that

history and a perception of one’s life,

interests many companies is what

or that of a passed loved one? The

we might call “found data”, the digital

answer to such questions is at the

exhaust of web searches, credit card

core of any discussion of “big data”

payments and mobiles pinging the

and how new digital traces might affect

nearest phone mast.

communication around and landscape






of death. Adding to this “found data” the “user generated data” from life logging

As esoteric as it seems, “big data” is

platforms, social media and cloud

already part of the lives of millions

storage and the phenomenon grows.

of people worldwide.




Certainly the


digital audience I focus on lives in

increasingly large part of everyday

a world where whether they like it or

life for an ever expanding audience is

not, many of their interactions are

creating a new legacy of information

already influenced by “big data”. The

our society has yet to comprehend.

information that is quietly collected

Digital legacy and the accumulation

through one’s actions online, on mobile

of experience as told thorough a

devices and corporations have been

1 “Big data: are we making a big mistake?,” accessed March 28, 2014, cms/s/2/21a6e7d8-b479-11e3-a09a-00144feabdc0.html#axzz2yyz9Gjhz


59 using this to predict habits, patterns,

people with timely, meaningful insights

and opinions. They pay a premium

(derived from big data and/or “local”

in order to get closer to individual

sources), organized and packaged

consumers and subsequently interpret

– often visually – to be accessible,

society on a completely impersonal

understandable, and actionable for

level. By contrast, I see an opportunity

everyday tasks.1

to provide a personal service that can harness the power of “big data”

Although Greenberg’s approach to

and use it to connect people on an

small data still lies within a commercial

intimate scale and foster meaningful

framework, the possibility of personal


data can be used to create a narrative of an individuals activities is speculated.

A further implication here is the insight

Turning this data into an actionable

we might gain into how using one’s

representation for businesses to use

digital trail can aid in allowing them to

may be a trending topic, but consider

develop an objective understanding of

the alternative and how this can be

themselves and those around them.

used for personal reflection, and

How do our habits and nuances tell


a more accurate story of our lives than we choose to share with those around us. How would our perception of others change if our own biases and inclinations were influenced by data collected about these individuals. This idea can have both positive and negative implications on current and future relationships and demonstrate the






technologies can influence memories and even how we understand past relationships. This idea of personalized “found






emerging field of small data theory. In his essay, Paul Greenberg defines small data as a data set that connects 1 “10 Reasons 2014 will be the Year of Small Data,” accessed Jan 19, 2014, http://www.zdnet. com/10-reasons-2014-will-be-the-year-of-small-data-7000023667/



The scope of this project has evolved

direct the conversation around death

from a design solution within the

and dying through design thinking. The

healthcare world to that of a social

obvious space for a this conversation to

innovation. The basic idea of asking

begin is through digital and interactive

how digital artifacts might affect our


view on death in the future is still the cornerstone of The End. But

As a result, this project focuses on the

the result of a year’s worth of work

group of what we call “digital natives”

makes more sense at this stage as a

along with early “digital immigrant”

speculative environment rather than

adopters by presenting them an option

a fully developed offering. The design

of how they can direct the future of death

solution I propose it to use the “artifacts”

in western society. By creating a forum

created throughout my process as

for the exchange of ideas or opinions,

potential lenses through which we can

this project will not present answers,

consider future consequences of our

but instead introduce prompts that can

digital world.

be further articulated and developed by its users. It is my hope that users take

The question is now how can I deliver

the process seriously and question if

the speculative attention I ultimately

they want a different approach to death

am after with The End. Through the

and dying, and if so, how they might go

presentation of a provocative and

about achieving it.

engaging idea coupled with the insights and research gathered, I hope to make a compelling argument for the need to



This project began as a symbiotic

concept began to shift from a physical

relationship between research and

design solution to a digital suite of

making. Information gathered during

solutions, before returning again to

the research would eventually manifest

the physical. This organic approach

itself in surprising ways when shifted

has helped establish three distinct

towards the making process. Insights

frameworks in which to design:

from each prototype then informed the

Designing for death is where this

next avenue of exploration for research

investigation began. This space I have


defined as the weeks leading up to and preceding the actual passing.

Making and conceptualizing ideas

The design landscape surrounding

early on contributed as the driving

the moment of death often resides

factor for this thesis and have been

in the care of the terminally ill or the

the integral push towards each re-

planning and preparation around the

frame and shifting of subject matter

consequence of the passing of this

throughout each iteration. Each step of

person. Research and prototyping

this process culminated in a prototype

into this space revealed the difficulty

that was directly influenced from the



temporary and fleeting as the moment



prior. Feedback from these prototypes either lead to further investigation into that solution space or killed that idea. Throughout each iteration, my larger

of death.






65 Research then directed my next round

My personal journey through this

of prototyping toward looking at the life

process led me to consider the concept

of a user or at the relationships and

of Last Words, a service platform

lives of those people and objects they

exploring the idea of post-humous

leave behind. Digital design became

communication that acted as the basis

the most accessible avenue for a

for many further speculative prototypes

single design solution add value to a

outlined in the following chapter This

users life as well as the relationships

concept pivoted this thesis exploration

they foster during this life. This insight

from designing for death to designing

guided me towards considering new

for communication around the subject,

technologies and how then these will


affect the future of death. Resulting

solution spaces mentioned in the

prototypes live both within the physical

previous paragraphs.

and digital. These solutions also began to shift from designing around the utility of an artifact to designing around the emotion of an artifact. The final series of design solutions ultimately ended with the prototyping of




after the death of the subject. These solutions



firmly in the digital realm and act as speculative solutions. The prototypes offered ask questions by providing the end user a platform to choose to either consider the consequences of such a service or not. As I mention above, these prototypes exist within three distinct solution spaces, those being before death, during, or post death. The prototypes that impact at least two of these solution spaces







This delve into death has taken me on

engulfs the field of innovation and

a journey, starting with hospice care,

design is frightening when we consider

through the psychology surrounding

the emotion and human aspects to



these solutions. New technologies

technologies have on our perception




are increasingly allowing us to create

of death and dying. Throughout this

a parallel life to our physical life, and

journey I passed through a series

thus providing an opportunity to design


the human out of the system.

physical artifacts, honoring the

deceased, eventually arriving at the idea of data is passively telling the

This chapter outlines the journey

story of our lives to millions. Digital

of this thesis through physical and

interpretation and the permanence

digital manifestations of the journey I

of this medium asks many questions

just presented in though the research

about online accountability and the

chapter previous. Many of the pivotal

ethics of this space.

artifacts presented in this chapter have direct call outs to that phase within the

My research and prototyping led to as

research process in which they were

far as to attempt to design the human


out of life. Bordering on designing for a dystopian future was a space this research led me, and a place I ultimately did not want to end up. The power of data, record, and our new digital existence that currently



Celebrate was initially developed as a celebration of death very early on. What if instead of a funeral, we celebrated a life through objects owned and cherished by a loved one at an exhibition. This idea was developed in the first week but is something I stayed very connected to throughout the process, with the notion of celebration.


71 71



Demented, an initial, speculative concept developed early on, this wooden spoon mixes craft with utility. Functionality is hindered due to the hole in the head of the spoon. Using this object (or rather, failing to use this object) represents the struggles those suffering from dementia navigate daily. The idea expressed through Demented represents the connection between purpose and utility within terminally ill patients.


75 75



Balance mindfulness




idea your

of life.

Borrowing in language from Demented, the scale plays off of the idea of craft meets utility, which underly a larger idea of purpose felt during end of life care. This speculative object was born from the fact that often we do not think about the balance in our lives until some sort of tragedy occurs, and often this is too late.


79 79



Purpose symbolizes a self defined milestone that you wish to achieve before your end. By physicalizing this idea we get a daily reminder that our time is limited and we should focus on the now in our lives. It also forces us to make a conscious choice and confront the idea of death in our lives by either choose or neglecting to do something about it on a daily basis. This was my memento mori moment. The consequence of this artifact was a pivot point in my person perspective on death and dying and how it relates to my current mindset.


83 83



B747_TE is a set of instructions that was designed to give the life you are now living greater agency. This concept is a mash-up of UCLA’s most popular online mindfulness exercise combined with a hacked Lufthansa airplane safety card. Like “Balance” (prior), B747_TE acts as a speculative design object asking the audience to consider their current life state and how this might affect their last days.


We call her GRAND for a reason...

Discover why. Gertrude, GRANDma of 7. Age 89.


Brandma is a result of looking at aging through the lens of a social intervention. As my research shifted this thesis towards the ideas of legacy and storytelling, the value of a life became quite important. Cultures have exalted their elders for their knowledge and guidance for centuries, and Grand asks how we can harness that enthusiasm once again in western culture by using the tools they recognizing such as advertisements and media.



Last Words are important, last words last forever, last words are closure. Last Words aims to lower the emotional barriers surrounding death by providing the platform that fosters posthumous communication. Designed as a social intervention geared towards the idea of digital death, Last Words works with the deceased and their loved ones by providing a platform to facilitate that relationship in a new and different way. This initial concept was taken further through a series of future iterations.


Now, now, my good man, this I can’t sleep is no time for making enemies.


I hope I haven't I can’t sleep bored you.




Last words as a branded object brings this discussion into the public realm. As the platform concept of last words provides a service that can be used both for good and evil, so to should the branding. Fostering communication



considering the consequences is much like an anonymous tag on the subway advert. Branding provides an analog version of this service in the form of a literal platform, on the platform, to share your last words.





Big Yourself is a creative service pairing that allows the user to objectify one’s life using “big data” and to interpret this information in a narrative fashion. By participating in this service, the user agrees to open up their digital record to analysts, who instead of pulling




the innate details of the user’s life before handing the data structure to a fictional author. Big Yourself is both a reflection on the data profiles we leave behind and examines the notion that we are using social media and our online Doppelgängers to create new digital lives that may be more contrived, in some ways, than that of a novel’s protagonist. Big Yourself encourages us to leave the writing to the professionals and focus on taking better Instagram photos.


99 99



Otwituaries Imagine a world in which the New York Times and Twitter combined forces to introduce the idea of constructive discussion around the death of an individual by publishing their final tweet. The goal here is giving an increased readership a glimpse into the life of a public figure, using data they publicly provided but perhaps never meant to serve as a capstone to their life and vice-versa.



Tropes is an investigation into a speculative future where we return the analogue. In this post digital world, haptic representation of ourselves are embodied in small physical objects. Trophies are totems pulled from our lives, pulled form our experiences, and based in science. The trophy is a culmination of physical sampling, neatly packaged into a public showing of your experience. Set in 2050, digital formats are retro, bitcoins have come and gone, as has physical wealth. The experience economy is emerging, and those with extreme experience show them off to the world through these totemic artifacts.



X+O– investigations the space of digital interpretation and exists as an artifact of learning. How might the transition back from digital to physical be literally aided both through haptic and graphic means? X+O– surveyed users by asking them to interpret a physical representation of the short phrase “Everything Is Ok” where various letters have been raised. Their intonation was recorded and analyzed. The findings varied though the process gave insight into other projects, namely the speculative object TONE.





TONE tackles the problem of todays communication, when removed from the physical, is often plagued by misinterpretation. Subtle nuances in how a sentence might be structured or read is lost when looking at a screen. TONE melds science and intent with the culturing and growing of a message, only to be understood and delivered when its intent has fully grown.





Finished is an event that embraces the insights these design solutions have presented and celebrate a “life� of sorts this thesis work has created for me and my fellow Products of Design 2014 masters candidates. This event physicalizes the idea of continued bonds, both through artifact and intent. An evening of celebration and ritual culminates with written messages, delivered in baton like vessels for those following in our path.


115 115


117 117



Last Words App is a mobile platform,




premise of the earlier web platform






communication, once a message is written it lives on.

concept with the same name. Further refining of the web concept showed

We do not know when our end

that this service should indeed live with

will be, and some messages may

the user, and be accessible whenever

become dated or irrelevant over time.

and wherever is needed. Utilizing your

Last Words allows a user to move

already existing contacts, Last Words

a message between two figurative

is a secure connection between your

“boxes� for each contact, one open and

life and those important to you.

one locked.

The interaction revolves around a

Upon passing, the locked box along

visual record and interactive timeline

with all of its contents gets sent to

of your last words, allowing both self

the assigned contact. The open box,

reflection and empowerment for the


user. Last Words is ultimately about

been locked to send is erased.

assuring you that your message is delivered, however, it is not limited to written word. Photographs, voice recordings other media that live on your phone can be delivered to your loved ones upon your passing. The platform








This thesis process has raised many

been actively working to develop this

questions be it personal, as well

culture and give it direction. We are at

as ethical which i feel need to be

the beginnings of a social movement



towards the normalization of openly

necessity of any of these design

talking about the end of life as we see


through the social meet-ups around

When we


considering see



somewhere between the speculative

the idea of death.

and the real. The reality asks us to consider a world where these designs

This idea of digital influencing how

exist while the speculative imagines

aspects of our lives is now at a time

the consequences of this world. Digital

where society is taking notice, and at

death is something that needs to be

this point lacks a clear direction and

in our conversations starting now

leader. The late Aaron Swartz, who

because of the changing landscape life

published this will on his personal

and death in a digital culture and what

website prior to his tragic death, is the

this implies.

type of influencer this social and digital movement needs. Swartz, a developer,

As mentioned earlier, we are in my

writer, programmer and activist has

opinion entering into the DIY phase

been an integral player since the age of

of digital death. Stakeholders such as

13 when he began to develop the now

Google and Facebook have recently

widely used online framework known

introduced reactionary solutions within

as RSS. Developers often leave each

their service platforms, but few have

other messages with how to manage


Aaron Swartz

125 their digital assets if something were

Foundation. They seem to have a

to happen. Swartz’s message, posted

reasonable policy about letting people

a year before his end to the public is

use the code.

included here. Websites If I get hit by a truck...

Please keep the websites operational

...please read this web page

where possible, with content written by me kept untouched where appropriate.



Appropriate pages (e.g. on aaronsw.

programmers about who will maintain




com) may contain a notice about what

the code when its author gets hit by a

happened with a link to more info. The

truck. This page is here so that if for

front page of should be

some reason I’m no longer able to

redone as appropriate with a link to the

keep my web services running, people

old page.

will know what to do. Grave I designate Sean B. Palmer as my

I’d like to rest someplace that won’t

virtual executor to organize such

kill me. That means access to oxygen

things. (And if you delete anything,

(although direct access would probably

Sean, I will haunt you from the grave!)

be bad) and not having to climb through six feet of dirt. For other stuff, email

I ask that the contents of all my hard

Sean. I’m sure he’ll do something

drives be made publicly available from

reasonable. If something does happen to me,

please update the footer of this page

Sean (or someone he designates)

with a link. Also email the relevant



lists and set up an autoresponder for

webmaster. Please continue updating

my email address to email people

the site and mirror list and ensuring the

who write to me. Feel free to publish

persistence of its URIs. (This means that

things people say about me on the site.

nothing controvertial or illegal should be

These are probably all obvious and I’m

included. Save those for cryptome.)

sure you’ll figure it out.

Source Code

Oh, and BTW, I’ll miss you all.

Copyright for my GPLed source code

Aaron Swartz (

should revert to the Free Software

I’m not dead yet!







127 I’m not dead yet. The sentence eerily

when confronting such a weighty

sets up the framework that design can


live in this conversation. Setting up

impact our digital lives will have on

the shift from DIY to product is how

death will progress organically in the

designers can take lead in creating

coming years, but The End points at

a world in which technology and

a unique opportunity and interactive

death are interlaced in unforeseen

environment that has not yet been

way, towards which me may be

designed for.

Discussion around the the

inevitably headed. In the end, this thesis needs to exist Using design to frame this conversation

because of the opportunity to add

is one potentially productive way get

value to this discussion of death needs

the a larger user base on engaged with

to exist.Missing this opportunity at this

the transformation of death practices

point and in a developing movement

on the horizon, and as a society define

would slow the progress made during

how we are going to live within this

the past decade and hinder a larger

evolving landscape. There is certainly

society at a time when as a whole we

an excitement that accompanies the

may be eager and open to accepting

potential of “succeeding at death”, and

a change. The End is the beginning

through effective design, perhaps we

of a discussion as to how design can

can begin to analyze our societal views

help us to re-imagine and confront

as well as consider the consequences

our relationships—both individual and

of changes that are already underway.

collective—with death.

In other words, understanding the ways digital disruption is affecting this conversation is important in framing the scale and goal of these solutions. While these products have incredible power to help people cope with death and dying, they also have the same ability to negatively impact this conversation. The idea of The End points to the beginning of a new look at the end of life might, at first, seem absurd. But perhaps that is what is needed


129 Mindfulness Institute. -- UCLA MARE -- Free download-able mindfulness exercises. Facebook. (2013). What happens when a decesaed persons account is memorialized. Accessed December 16, 2013, Adams, Michelle . “This is the Most Important Dinner Party You’ll Ever Attend. Time , 14 Nov. 2013. Web Allen, Woody. Without Feathers: Death (A Play) New York: Random House, (1975) Evans/Wentz. The Tibetan Book of the Dead, United States: Oxford University Press. (1960) Field, Nigel P, Beryl Gao & Lisa Paderna.”Continuing Bonds in Bereavement: An Attacment Theory Based Perspective” (Phd. diss, Pacific Graduacte School of Psychology) 2005. Greenberg, Paul. “10 Reasons 2014 will be the Year of Small Data,” accessed Jan 19, 2014, Hara, Kenya. (2010) White, Switzerland: Lars Muller Publishers. (2010) Hurst, Aaron. The Purpose Economy, United States: Elevate. (2013) Harford, Tim. “Big data: are we making a big mistake?,” accessed March 28, 2014, http:// Kadlec, Dan . “Business & Money.” Business Money A Good Death How Boomers Will Change the World a Final Time Comments. Time , 14 Aug. 2013. Web Levine, Stephen, Unattended Sorrow, United States: Rodale. (2005) Mace, Nancy L M.A. / Peter Rabins, M.D. M.P.H. The 36 Hour Day, United States: Johns Hopkins Press. (2001) McEwen, Rhonda N. & Kathleen Scheaffer. “Virtual Mourning and Memory Construction on Facebook: Here Are the Terms of Use.” Bulletin of Science Technology & Society, December 19th 2013. Patnaik, Dev, and Peter Mortensen. Wired To Care: How Companies Prosper When They Create Widespread Empathy. Upper Saddle River, N.J.: FT Press, 2009. Ross, Elizabeth Kubler. Death: The Final Stage of Growth, United States: Simon & Schuster. (1975) Ross, Elizabeth Kubler. On Death and Dying. London: Tavistock Pubs. (1969) Rothaupt, J.W., & Becker, K. A literature review of Western bereavement theory: From decathecting to continuing bonds. Family Journal 15 (1). (2007) Sacks, Oliver. An Anthropologist on Mars, United States Random House. (1996) Santrock, J.W. A Topical Approach to Life-Span Development. New York: McGraw-Hill. (2007) Swartz, Aaron. “If I get hit by a truck...” Accessed April 8th, 2014, http://www.aaronsw. com/2002/continuity. Wallis, John. “Contunuing bonds: relationships between the living and the dead within contemporary Spritualism” (Phd. diss, University of Warwick, UK) 2001






The End.  

MFA Thesis Process Book, Matthew Barber, Products of Design, 2014

The End.  

MFA Thesis Process Book, Matthew Barber, Products of Design, 2014