Life After Death by Swathi Madike

Life After Death

Life After Death Family Refusal of Organ Donation

Swathi Madike

RMIT University Honours Project Supervisor: Liam Fennessy Published November 2014

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Swathi Madike 0433148969 swathi.madike@gmail.com.au

I would like to say thanks to: My supervisor Liam Fennessy for the unwavering encouragement, patience and eccentric stories. To past lecturers Scott Mayson, Nigel Brockbank, Leyla Acaroglu, Praveen Nahar, Sophie Gaur, Soumitri Varadarajan and Mick Douglas, who have shaped the path to here.

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My family for their incredible support during this endeavour encountering four years of foam dust, 3d printer sounds in the midst of the night and the needless amount of hoarding that filtered into the home.

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Abstract

The prospects of a successful organ transplant are miniscule and the opportunity for increasing the rates of donation are as complex as they are sensitive. This problem is compounded by only 20% of Australians formally registering to donate their organs and a false public perception that registration constitutes legal consent. Of all the people that die, whether registered or not only 1% are deemed medically suitable for donation. 40% of these families who are medically eligible donors refuse to provide post-mortem consent to the donation of their loved ones organs and tissue. Literature points out that the key to a successful donation, is clear communication of oneâ&#x20AC;&#x2122;s intentions to their loved ones. However conversations surrounding death and organ donation can be uncomfortable for families, and in some instances taboo. Through the application of service design principles the complexity of the current donation system, where the family has the final say, is opened out so that a sensitive and meaningful conversation can be initiated. Life After Death deploys processes including scenario development and exploratory design games, to debunk misconceptions about the organ donation system. It aims to make plain the often-complex medical and legal terminologies and strictures, and to facilitate a constructive conversation about post-mortem decisions through a combination of design communication elements.

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How might awareness and the dialogue of organ and tissue donation decisions be prompted by a communication tool?

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Intention of Registration My Last Breath Introduction Medical History Literature Review My Gift of Grace Trial Becoming a Donor Myth Busting The Gap Field of Practice Death & Me

Dialogue of Post Mortem Decisions Methods

Providing Consent Impact Scenarios Personas Business Model Canvas

Autopsy Working with Animators Website Cards Final Proposition

Blood Matching Exploratory Design Games Experience Prototyping Findings

108

Transplantation Final design

112

Eulogy Conclusion Personal Reflection

118

Legacy Bibliography References

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Table of Contents

Intention of Registration My Last Breath Introduction

Elephant in the room

This chapter enters with the philosophy I would like to bring into my design practice. It then provides an outline for the the project.

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Figure 1 Visiting permaculture practises in Ganeshpura, India. SEWAâ&#x20AC;&#x2122;s Ecopark - Self Employed Womenâ&#x20AC;&#x2122;s Association

My Last Breath

After the tour of the surroundings, as I was signing their guestbook the head SEWA Ecotourism asked me, “So what brings you out here, what is your project about?” “I’m studying permaculture” “What is that?” “Creating sustainable human habits which follow nature’s patterns” “..That’s interesting” And I just smiled. To me this is like when the English language cannot translate a word without a long sentence, rather ten words to explain one. So I hope my practice of design is such that integral methods and values that are prerequisites to good design follow are ingrained into me. Thus not needing to use that vocabulary to define my way of working.

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The most insightful experience that comes to mind is when I was on exchange in Ahmedabad doing a research project on permaculture. I had organised a visit to SEWA’s (Self Employed Women’s Association) Eco Park, out in a nearby town to Ganeshpura. Initially quite sceptical to go as there was something about the word ‘Ecotourism’ didn’t resonate with me. Nevertheless, I thought permaculture is a newly coined philosophy and this small town is implementing it so let’s go have a look and visually grasp the concepts. Arriving, I could immediately see all I had learnt through Masanobu Fukuoka’s book ‘The One Straw Revolution’ in my surroundings. The scattering of pants and herbs, pesticide free crops and very minimal manmade structures, and most importantly the delicious organic lunch.

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â&#x20AC;&#x153;communicating about death when we are in good health ensures that our wishes for post end of life are carried outâ&#x20AC;?

Introduction Keywords: organ donation, family refusal, myths, product service design, scenarios, exploratory design games

Describing the project as “family refusal of organ donation” the primary reaction from those around me was shock towards the idea that their family could veto their decision. Exclaiming how unjust this system is and that Australia should change to an opt-out system instead. Regardless of our opinions, it is important to accept that after our death we would no longer exist to stand up for ourselves and that the limelight inevitably shifts to our loved ones. To put this into perspective out of all the people who die at hospital only 1% of these are suitable for organ donation. This is due to the brain death criteria which means that your body can be kept on a ventilator to keep the organs functioning. 40% of these families refuse this opportunity for various reasons. That is approximately two hundred and sixty people in 2013 who had the appropriate circumstances, but their families didn’t go ahead with the

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Death is the elephant in the room. It is a loaded conversation, a territory of communication that is still somewhat taboo. To think of our end of life decisions is very much perturbed subject matter. We all come from various cultural backgrounds with traditional or ‘default’ customs. However, in a contemporary society where crematorium heat is being recycled, designs such as the Mushroom Burial Suit are proposed, and body transplants exist, there is a space of discussion that needs to be met.

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Figure 2: Body Painting

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procedure. One of the primary reasons being that they were not sure of their loved ones wishes on this topic. Studies demonstrate that 90% of families follow the intentions of the deceased if they know of them beforehand.

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This project aims to address the detrimental absence of adequate dialogue. One of the reasons for this lack of communication is legal documents such as a will. People are mislead to believe that a will enough, yet it is unlikely that your family would have time to look at your will before deciding to provide consent as organ donation is time precious (A heart has up to four hours to be transplanted!). An adding factor to this issue is how medicalised the process of dying has become, and it is important that society regains it. The majority of us will die in intensive care at a hospital. Thus death has been removed our homes. Organ donation also has many myths surrounding it. The current campaign of DonateLife is very informative however lacks the friendly nature that this uncomfortable topic requires. The research question is ‘How might awareness and the dialogue of organ and tissue donation decisions be prompted by a communication tool?’. Engaging with the principles of human centred design this project aims to aquire an clear understanding of the users. Testing existing concepts in this field such as holding a ‘My Gift of Grace’ game night has been a primary driver. A game structured around end-of-life care decisions that could come under a living will for those who are terminally ill, and their families. Thank you chips and coin tosses dispel the tension that surrounds the loaded topic. Looking into precedents such as this demonstrated that this playful structure alters the mindset of players and are less inhibited without compromising honest emotions.

Primary methods employed are service design strategies, scenario development and iterative experience prototypes. The literature review uncovered new issues such as exploring motivations of people to register for organ donation, debating whether altruism is a sustainable motivation for potential donors. Exploratory design games as a research method is demonstrated to understand game-play dynamics in a co-creation group. Individuals who find this Refinement is based on qualitative data from topic difficult to confront experience prototyping. Developing an ideal to measure the qualitative data is key could benefit from a tool way feedback required to generate a responsive developed to help design and a viable concept. Conversation of this nature requires a facilitator. Individuals who find this topic difficult to confront could benefit from a tool developed to help organise the participation. Combining this with the theory of gameplay, a social process for communication can be fostered. The development of this facilitation takes the form of a communication toolkit for families. Initially brought into the family environment by an individual, it aims to take the burden of one personâ&#x20AC;&#x2122;s shoulders and ease them all into a meaningful discussion. It is about repackaging information to make it both accessible, enjoyable and lead to a productive outcome. Everyone can benefit. For the individual, communicating in good health ensures that our desires for post end of life are undertaken. Hence their familyâ&#x20AC;&#x2122;s can have a peace of mind that they can respectfully conduct the procedures and carry out your wishes as a way to celebrate your life. Finally, if your wish is to donate your organs and tissue there is the possibility of saving someoneâ&#x20AC;&#x2122;s life.

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organise the participation.

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Medical History Literature Review My Gift of Grace Trial Becoming an Organ Donor The literature review studies precedents and text on the key themes of facilitating taboo conversation, activity as a tool for communication, game play as a mindset, and death issues. My Gift of Grace is an existing conversation game about end of life that I played with some friends. Lastly, I take a service safari of the current organ donation system and register as an organ donor.

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Literature Review FACILITATING TABOO CONVERSATION Communicating with others about inhibiting subjects, can sometimes be extremely overwhelming and make us feel vulnerable. Virginia Braun’s PhD is on the cultural structure surrounding the vagina and describes the problematic nature of her sensitive and oppressed research topic. Phrasing it as “disturb(ing) the constructed division between public private”. Interestingly goes to suggest that forbidden topics questions forbidden topics are not on are not brought up to guard the listener rather brought up to guard the than the speaker (Braun, 1999). There can be important conversations to have with loved listener rather than the ones, friends or introspect within ourselves. The speaker reasons for the confronting nature could range from a personal experience, your personality or cultural influences (Braun, 1999). Initiating this latent content has to be done suitably and with sensitivity to enable a constructive result. Sarah Rubin argues that the facilitator is a filter of information and the director of conversation flow. “The illusion of work” is a coined term for the negative influence of sifting conversation, done subconsciously by the group facilitator (Rubin, 2011). Instigating taboo topics that are relevant to the group, but kept within your comfort zone can be detrimental to addressing the underlying crux of what constitutes as unspeakable. Steering the flow of conversation to accurate taboo content is essential to an unbiased outcome based upon the

needs of the target group (Rubin, 2011). However if the facilitator is uncomfortable talking about a particular subject then it may not be smart of them conducting the meeting as participants may be turned off by this attitude. Adequate training would be required to ensure their inner attitude doesn’t pass through into their expression.

GAMEPLAY AS A MINDSET Games encompass diverse objectives and skills to engage with. A board game such as snakes and ladders is fundamentally based on chance as your position in the game is dependant wholly on the dice. Alternatively, Monopoly also encompasses an element of strategy in how you decide to purchase property, use your money etc. The other end of the spectrum is chess, solely strategy and intellect. A balance between the following components is required for organising participation of a constructive dialogue: 1. The chance element which provides a framework for the participants of different interests and expertise to have a level playing field. 2. The element of strategy/skill gives the participants a sense of power and deserving of their actions and outcomes (Brandt, 2006). These are ideal for a family setting which invloves a range of ages, expertise. A well crafted game can bring these people together (Blechman, Olson, Schornagel, Halsdorf, & Turner, 1976). Furthermore, games have the ability to dissipate reality by providing structure and framework for set activity. “Games separate a

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ACTIVITY AS A TOOL There are different approaches we can take to aid us in integrating the taboo into our conversations. Eva Brandt (2006) states, “Organising participation is one of the cornerstones in designing” and activities can be seen as “things to think with”. The social process of conversing can be staged by a constructed activity. This can act as a vehicle to provide those keenly interested in engaging in the dialogue. For instance walking around a cemetery as a congregation point for attending a Death Cafe.

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particular aspect of social interaction from its cultural context and weave it into a special context of its own”, theorises Karen R. Krupar (1973). From a young age we engage in playful activity around a set of rules and characters that we take on, usually with communal objectives that require investigation (Krupar, 1973). They take players into a new space which results in less inhibition. Although the communication and the other players are real, the “mindset” is altered (Vaajakallio & Mattelmäki, 2014). A disguise in some respect to where real reactions are evoked from participants under the umbrella of gaming rules and acceptable play. There is always an underlying apprehension whether it be surprise, education, humour or rivalry, integral to maintaining momentum of play. Furthermore, a tool such as a card game can replace the role of a facilitator. Designed by a human-centred design firm The Action Mill, conversation game ‘My Gift of Grace’ is a series of prompts which allow for issues around end of life decisions to be discussed with family and loved ones. They firm found that conversations of this nature “can improve your quality of life” and “help get perspective” (Mill, 2013). Alternatively, the combination of facilitation and an independent tool is explored in SeCZ TaLK, a board game which aims to generate a discussion on sexual health amongst teenagers with chronic conditions. “Almost 40% of adolescents disagreed with the statement ‘I learned or heard something new’”, this statement indicates that in this case the objective may have not been new knowledge, rather the open atmosphere that is created (van der Stege, van Staa, Hilberink, & Visser, 2010). Both SeCZ Talk and My Gift of Grace are similar in this; the teenagers are aware of their “sexual identity, physical limitations and pubertal effects”, and in the same way those who are terminally ill are well aware of living wills, hospice, the need for a proxy and that a funeral will exist after their death (van der Stege et al., 2010). Also, the notion of a taboo within a taboo is established in SeCZ TaLK’s analysis, it is acknowledged that groups have to be selected delicately due to the potential of abuse within

DEATH ISSUES: LIVING WILLS & THE MEDICALISATION OF DEATH “conversations of this Living wills provide control to people on nature can improve your their end of life decisions (House, 2013). The quality of life and help get ability to avoid potential situations where you may be on a ventilator vegetative, with no perspective” functioning senses as your family fights over whether you should die with pain relief, or be kept alive ‘to do whatever is possible’. (Horin, 2012). It is likely that by this stage of deteriorating health that a person is too debilitated to make their voice heard. Dr Celemarjor, deals with these situations regularly and expresses his concern that it is unfortunate that the most aggressive family member’s wishes are usually carried out, over the doctors opinion, over the majority the patient’s loved ones, and doubtfully the patient themselves (if they had once verbally voiced an opinion). Additionally, Dr Celemarjor advises his audience to never place trust your children, as it is proven they don’t make the choices they would on themselves! His position at the ‘Festival of Dangerous Ideas - Death Gone Wrong’ is that living wills must be compulsory to over 70 year olds and must be updated every three years (House, 2013). Furthermore is the medicalisation of death. Death used to be a phenomena that surrounded us in our homes and daily lives, now as a separate entity the occurs is hospitals. 1 in 10 of us will die in an intensive care unit (“Let’s talk about dying - Peter Saul,” 2013). Repossessing the course of death and taking the initiative to develop our understanding of our options is key urges Dr Peter Saul, senior intensive care specialist. As a consequence of the shifting current culture we lack understanding in 3 things: 1.

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professional and patient relationships. Another example to explain this nature could be a support group for parents with children with special needs. As they talk about their child’s experience at school the taboo was actually about which parents could afford private tuition (Rubin, 2011).

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The people who die at hospital

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The people who die at hospital who can donate their organs

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Out of this 1%

Figure 3: Infographic 1

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40% of families do not give consent for the organ donation process to proceed

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Acknowledgement that death cannot be talked about last minute (“Let’s talk about dying - Peter Saul,” 2013) 2. The advancement of technology which pushes the limit to keeping us ‘alive’, and the accompanying repercussions on the quality of life (House, 2013). 3. The varying levels of ‘death’, you could in fact be in catatonia, locked-in syndrome, three different vegetative states to name a few (Kastenbaum, 2012). CONTEMPORARY POST MORTEM IDEAS After death comes the the post mortem decisions and these days there are many alternative methods which promote being accountable for what happens to your body after death by accepting decomposition. This is explored in the design of the Mushroom Burial Suit by Jae Rhim Lee (“Video: Mushroom Suit,” 2013). She describes her project as ‘decompiculture’, “the cultivation of decomposing organisms” (Lee, 2011). Blending science and art the mushrooms that are “never trust your children, cultivated speed up the degradation process feeding upon the body. Another instance as it is proven they don’t by of sustainable degradation is recycling make the choices (post crematorium heat for energy to be used in domestic and public settings such as chapels mortem) they would on and offices. Moral questions are being themselves” explored, however there economic gain and environmental benefits speak for themselves (Mourant, 2011). Less far fetched however still in the process of acceptance is organ donation. 6 out of 10 of us will die from organ failure (“Let’s talk about dying - Peter Saul,” 2013) and “Less than 1% of people die in hospital where organ donation is possible” (DonateLife). Evidently, more potential recipients on the waiting list than potential organ and transplant donors. Some assert that if you are not listed as an organ and tissue donor, then you should lose the right to receive one (House, 2013). Cantarovich(2002) suggests that a primary reason for the low consent rate could be that “Society is not aware that acceptance of the use of body parts after death offers a unique source of health and provides a wonderful chance

When a family is aware of their loved one’s wishes, 90% are willing to carry these out

90%

Figure 4: Infographic 2

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of life and well-being for everybody”. Another reason suggested could be the idea of helping someone unknown to them at a highly stressful time. A setback of this already highly selective process is the drawbacks of families refusing the donation of their loved ones organs. In DonateLife’s report 2010, it was disclosed that “less than 60%” of families agreed to the donating wishes of their loved ones when ask for (Oberender, 2011). This could be a consequence of the 32% of families who don’t talk about their choices, who accounted that settling on a decision was more taxing. These may have been those who also felt that they weren’t provided adequate time to make a decision (DonateLife, 2014). When a family is aware of their loved one’s wishes, 90% are willing to carry these out, partly as they familiar and also the desire to remember the deceased through their wishes (Radecki Breitkopf, 2006). There is literature on the idea that altruism may not be the most efficient way to promote this process. This may be the motivations behind it however practically it is not being demonstrated (Cantarovich, 2002) (Oberender, 2011). DonateLife’s key findings from their national study is that 81% of families donate due to the ‘opportunity for something positive to come out of tragedy’. Many also felt comforted in their grief. This suggests that the attention of motivation should be heavily directed towards the family. (DonateLife, 2014).

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Figure 5a, 5b, 5c: My Gift of Grace Trial

“I probably would want to tell my mother first, I don’t think my dad could handle it. She could tell everyone else so I didn’t have to”

“I don’t like handling emotional people so that makes me uncomfortable”

My Gift of Grace Trial

PARTICIPANT’S THOUGHTS AND OBSERVATIONS: “Don’t take pictures, it will ruin the ambience” Person 1: “I didn’t really answer all the questions honestly, and some I just didn’t know what to say” Person 2: “But now you are thinking about it, this is like a starting point” Suggestion: the game be played amongst those with a similar mindset to avoid heated discussion.

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MY OBSERVATIONS: - The difference between one person asking another a ‘personal’ question compared with one person asking a question off a card ensured that it couldn’t be taken personally. The element of chance involved in the cards you picked also did the same thing. - The monopoly money worked really well as it gave a sense of humour to an intimate gesture of valuing someone’s answer. - The rules got changed and one question was read out and answered by the player followed with everyone’s participation.

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Figure 6a, 6b, 6c: Organ Donation Registration

Becoming an organ donor

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There are three ways to register; you can do it over the internet, over the phone or receive the form by snail mail. I decided to do it through the post as the registration form is attached to an information brochure. Filling out the form only takes five minutes, I just needed my medicare card details, general details and to specify which organs that I would like to donate. Then I walked down the road and popped it into the mailbox. The process is very simple and easy for someone who is interested. The facts are clearly presented, and all resources relating to this process are easily accessible from the same page. I only registered this year to become an organ donor as a service safari experience to analyse the current system. To be honest, it wasnâ&#x20AC;&#x2122;t a significant moment as throughout the year I have talked about this topic with my family. We are already aware of each others desires and know that registering doesnâ&#x20AC;&#x2122;t mean more than that. Both my parents registered as organ donors when they got their drivers license and made their intentions clear. In India my grandfather wished to donate his eyes, however when he died due to a heart attack this was not possible. Nevertheless it is meaningful for us to know that he had thought of this beforehand.

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Myth Busting The Gap Field of Practice Death & Me The gap is a concise look into the sustainable death practices, itâ&#x20AC;&#x2122;s dependance on conversation and the repercussions of not engaging in them. The position shows how I have narrowed down the field of research to the family refusal of organ donation. It then talks about how death experiences in my life has influenced how I structured this project.

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Figure 7a, 7b: The Will Kit

The Gap

LEGALISED SYSTEM Our legal system requires for our choices to be formally lodged, particularly around living wills as decisions surrounding will be made when you are incapacitated and unable to speak for yourself. In the instance of a will, it is presented as a compacted dry document, lacking the human aspect of emotion. Also seen as secret papers that no one dares to talk about until after death. There is one big downfall when it comes to wills and post-mortem decisions. As soon as you die it is unlikely that your family goes straight for the will. It may well be too late for your wishes to be carried out. Furthermore, In times of grieving it is unlikely that your loved ones will be in the state to make them for you. It is said that in difficult times, people revert to learnt behaviours and death is one where we have a default position that we inherit from our lineage. For example, saying that everyone in my family buries, this makes contemporary post-mortem notions unlikely to be performed. Unfortunately, this societal constraint does not correlate with people voicing their opinions to their family before death.

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TABOO OF DEATH The topic of death is a long-standing taboo in society. An uncomfortable and sometimes highly emotionally loaded subject matter to converse about. We all must cease to exist one day, and our mortality is inevitable, however this idea is confronting. It holds a variety of opinion and theories based on numerous religious rituals and genealogy. A worthwhile topic as is a phenomenon that concerns all people.

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MEDICALISED SYSTEM Furthermore, the process of death has left the intimacy of our homes and moved into the medical system. No longer living with our sick grandmother in the last month of her life, we are not connecting with the very human side to death. Although medicine is aiding us, in the end the experience has to be chosen by us. And more importantly, experienced by us! Thus, there is no right or wrong but having that sense of responsibility In the end it is your that it should be a well thought out decision. family’s decision, it may In a recent report, it was noted that 18% of families approached by a donor coordinator seem unfair to some, didn’t feel well informed of the donation nevertheless it shows that process. 18% also felt ‘rushed or pressured to make a decision’ (DonateLife, 2014). This conversation amongst emphasises why families should be of greater loved ones is imperative. importance earlier on. OTHER MYTHS THAT EXIST Through the literature review, it was found that many myths exist regarding organ donation that are prevalent. The primary one being the meaning of brain death wrongly mixed up with the definition of a coma. The clear difference being that in a state of coma the brain has the possibility of healing itself. Other misconceptions such as as inaccurately feeling that their family member will be too old to donate, or that they may have to pay for the surgery are not so impending but it reiterates the need to reassure families of the real facts. CURRENT CAMPAIGN Lastly, with organ donation you can legally register as a donor. However in the end it is your family’s decision, it may seem unfair to some. Nevertheless it shows that a conversation amongst loved ones is imperative. To address this, government body DonateLife has the slogan “Discover, Decide, Discuss”. (Reference home page) The current campaign of encouraging conversation amongst family members is highly brochure based. It is also very plain and over

sanitised. These mediums and aesthetics may be due to regulations and ensuring that it does not offend any person. The downside of this is that is doesn’t make light of the taboo. Information about myths of organ donation is well documented, in these brochures and over the internet. However, what makes this engaging and friendly to those who aren’t searching for this information is the missing link. It has to be beyond informative; there needs to be a desired for engagement. ALTRUISM AS AN INCENTIVE There are many ways for people to make use of their bodies after death through responsible disposal. The methods used at the moment to advocate these is primarily based around altruism. This philanthropic technique has been unsuccessful. This could be due to the ‘charity’ type image that it emulates, detrimental if perceived as an extra gift. Rather a sense of responsibility needs to be instilled for communal movement around a sticky topic.

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Figure 8: DonateLife Brochure

FIELD OF PRACTICE

Social issues that are difficult to talk about

Taboo Topics

A topic which pervades the lives of everyone

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Death

The Body as a Resource

DeathTopics Taboo

Com

Family Refusal

Contemporary Post Mortem Decisions Figure 9: Field of Practice

Organ Donation

My th

Idea Generation

Human centred design

Scenario Development

Sterile Campaign

Not Knowing Intentions of Loved Ones

Experience prototyping

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Service Design

Lack of Family mmunication

yths about he system

Reflexivity

Study of Previous Models

Testing Concepts Not in touch with death

Exploratory Design Games

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Figure 10: Silver Platter used for death ceremony

Death & Me Trying to evoke conversation out of others, it only has resulted in introspection on my behaviours around death and other latent topics. This project has provided my family to talk about our end-of-life wishes, and it has been a truly positive experience.

Sounds like something my dad would say. As he really did the other night as we were cooking dinner. Every year for my grandmother’s death anniversary, our family holds a ceremony where we hold a feast for her, cook her favourite food and share stories that are evoked at the dining table. The table features a handmade raised silver plate from her wedding. It is a sentimental object of great a value and a tangible symbol to connect to. On the hand, death is one of those things that is emotional yet can equally bring about fits of laughter. When my brother Shakthi was six he was watching a comet in the sky with my mother out in the backyard. Trying to emphasise the rare moment she said,“The next time we see this comet it will be 2063”. Shakthi laughing, “Amma (Mum), you will be dead by then!”

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Boy, when you’re dead, they really fix you up. I hope to hell when I do die somebody has sense enough to just dump me in the river or something. Anything except sticking me in a goddam cemetery. People coming and putting a bunch of flowers on your stomach on Sunday, and all that crap. Who wants flowers when you’re dead? Nobody.~J.D. Salinger, The Catcher in the Rye, 1945

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Dialogue of Post Mortem Decisions Methods This chapter considers how research through design can make an intervention into a complex social issue. Specifically looking into exploratory design games and service design methods it aims to develop a strategy which can be applied to a model for other taboo topics.

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Methods

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Life After Death requires a human centred design approach in order to call out to peopleâ&#x20AC;&#x2122;s feelings regarding death and organ donation. To instigate the fruitful conversation about topics that are not usually talked about, it is hoped that these methods will provide insight into communicative behaviours. STUDY OF PREVIOUS MODELS A service safari into the current organ donor registry process was an invaluable experience to get into the shoes of the target audience and observe how this decision impacts other stakeholders, such as my family. Furthermore, looking into precedents such as My Gift of Grace has been a notable driver for the project. User testing this with a group of friends allowed for an insight into crafting conversation games. Other inspiring precedents have been Trade School, DIY pads workshop and Journaling pregnancy. These have been particularly motivating as their models have the potential to be contextualised towards other issues. LITERATURE REVIEW The literature review explores an array of subject matter and stimulus. This process has shaped the project in challenging assumptions around post-mortem issues. I had some difficulty in finding relevant research on the communication element of conversing around taboo topics. This hurdle could be attributed to the abstract nature of the conversation as an intangible human product. Reflecting upon this, it is evident that I will run into the same obstacles as I try to quantify my results of experience prototyping. I will have to develop a method to measure

conversation, as well as its relevance to the purpose of the study. Game-play articles were particularly intriguing to understand how it elicits specific responses in participatory groups. Articles relating to death issues were abundant, and this reinforced the magnitude of this predicament.

the ‘game universe’ also plays a similar role in bringing a relaxed mindset to the participants

EXPLORATORY DESIGN GAMES Participatory methods such as this require some element of ‘staging’ to be successful. Similar to writing scenarios as stories to take it into a fictional world, the ‘game universe’ also plays a similar role in bringing a relaxed mindset to the participants. (Brandt, 2006). Furthermore, exploring the varying degrees of how open-ended I want to formulate the game fragments. I would like to adapt this technique by giving the participants an objective that removes the real purpose of the co-creation group. I hypothesise that this diversion will result in more natural behaviour as they are not explicitly analysing their behaviour. This method would be ideal to test out the understanding of organ donation terminology by creating a competitive atmosphere. EXPERIENCE PROTOTYPING How experience prototyping is organised is fundamental in collecting accurate data. I have a hunch that being present at these sessions may not result in a ‘true’ family conversation, even

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SCENARIO DEVELOPMENT Developing scenarios has been an integral component to spark ideas and new trains of thought. To be provoking, I have found that writing short stories has been effective to have an open mind. This format allows us to not judge too quickly on the viability of the concept when presented in a fictional manner. Tapping into different characters and hypothetical situations allows for a variety of frameworks to be explored and subsequently developed. It has particularly helped to envision futuristic ideas.

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video/audio recording could be too invasive on the situation. An evaluation could be performed by comparing an unstructured conversation to the structure of the activity chosen as a measure of whether it was the gamification alone which was integral to the discussion taking place. The demographic in the pool of families for the comparisons would have to be picked carefully to ensure that the data is not skewed. Influencing factors could be based on culture or varying personalities. A strict family/participants is likely to stick to the rule of the game, the energy of a sanguine character may find it difficult to stick to the given structure, whilst an intellectual will unpack and critique the structure of the game itself. INTERVIEWS It is planned to utilise this technique to extract the results from experience prototyping. I cannot judge the success of the outcome on observation alone, as interviewing will allow for self-analysis of the participants. Furthermore, it is not suitable for me to be present during user testing, thus a structured interview is the primary form of feedback. The challenge will be to get an even range of demographic and cultures of whom I have access to. The value of culture and identity to a family are both very important and people need a way to feel a sense of belonging to both parts of their life e.g. Traditional and contemporary ideas. These are the kinds of attitudes, anxieties and interests I would hope to investigate through interviews with the outcome. CUSTOMER JOURNEY MAP Detailing the system out will be important to establish touch points of users, and in this case, the individual registering as an organ donor and their family. Looking into the common points of interactions and the varying moods that evoked is important to ensure that the overall experience is a positive one. In regards to Life After Death, the serious conversations around post-mortem wishes shouldnâ&#x20AC;&#x2122;t lead to conflict, and if it does, something is there to dissipate the tension by the end of the journey. Essential for

communicating the concept as without comprehensive mapping, the process could get lost. (Stickdorn & Schneider, 2010)

consumed

REFLEXIVITY Reflexivity is a method of watching ourselves as we watch others. We all have our own peculiar approaches, assumptions, incentives and external expectations; a sieve of all information consumed and actioned taken. It is useful to keep in mind when conducting contextual interviews or fieldwork. To be aware of what kind of questions you are asking and why you consider them to be important. It can be a challenge to use reflexivity to our personal design practices as it requires a fair deal of introspection and honesty.

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BUSINESS MODEL CANVAS This method is particularly useful to show the value of the conversation around death being an intangible outcome by fleshing out the implementation of final concepts. Accounting for the various factors such as stakeholders, value propositions, customer relationships and cost structures. Consequently, displaying the significance of the idea beyond design and how it could be viable for the real world. In some way, you are trying to blend the aim and concept with the realistic side of customer we all have our own motivations and economic factors. (Stickdorn & Schneider, 2010) Drawing comparisons peculiar approach, between the designed outcomes and assumptions, incentive precedents will be exciting to see the potential and external expectations, for the model to be reapplied to another a sieve of all information issue/demographic/alternative methods.

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Providing Consent Impact Scenarios Personas Business Model Canvas Myths of organ donation The projected influence of this project on both people and design, there is a strong motivation to address the misconceptions of the organ donation process. Primary investigations of scenarios explore potential results can come from this cultural shift of bringing death into the open.

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Impact

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PEOPLE Challenging participantâ&#x20AC;&#x2122;s perceptions on candid ways to communicate and demystify socially awkward topics that are usually swept under the rug. Also, welcoming the idea of death being valid conversation in the first place. 1. Firstly, the security of being able to fulfil your own desires and plans for post end of life. 2. Developing a sense of social and sustainable responsibility amongst people regarding the â&#x20AC;&#x2DC;disposalâ&#x20AC;&#x2122; of their body after death. This is by recognising that your physical matter exists beyond your mind can perceive. 3. Finally as a result, there will be a peace of mind for loved ones that they can respectfully conduct the procedures and carry out your wishes as a way to celebrate your life. DESIGN Provoking designers on how they perceive the methods of making and game-play as a method to create rich and meaningful human connections. Challenge conventional understandings of how a design project is conducted, through analysis and trials of new research methods which organise collaboration. A platform that other locations can take on board to recreate in a similar fashion like Trade School or the model could address different issues. Tapping into ways that this model can be reapplied effectively by understanding the similar characteristics that are required in taboo topics to make this a possible transition.

ved a life ransplant

1122

Organ Donors

Received a life saving transplant

260

Potential Organ Do family didnâ&#x20AC;&#x2122;t give

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122

391

Potential Organ Donors whose family didnâ&#x20AC;&#x2122;t give consent

Figure 11: Infographic 3

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Figure 12: Scenario 1 Illustration

Scenarios SCENARIO 1 Activity as a tool kit The Australian Government Organ and Tissue Authority want to promote their campaign of organ and tissue donation to Australians. Just over half of our population knows the decision their loved ones have made on this issue and of those 96% said that they would support the donation.

Life After Death

An activity tool kit is sent out to citizenâ&#x20AC;&#x2122;s mailboxes. It is intended to be conducted by families of mixed ages groups. Utilising the materials provided to complete the task is key to feeling comfortable during the unusual conversation. The kit is an opportunity to both prompt conversation and also gather integral information regarding attitudes towards organ donation. The outcomes of this very practical and personal activity could be sent back through the supplied pre-paid parcel satchel. Consequently, this activity goes beyond personal use and acts as research to the Authority.

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SCENARIO 2 Product Service /Installation It is imperative to develop a personal responsibility for the materiality of your body after death. There is a need for someone to deal with this aspect to a death and inevitably ends up being your family and loved ones. There are many sustainable and social means to contribute your mortal body towards eg. medical research, organ donation, nutrients for the soil, energy for the home. This service would be about making these options easily accessible to people to consider. It could be an art installation where all the information is collated, presented and attendees are able to place an interest towards subjects/methods they are interested in. Contributing to a public art installation with the subject matter of leaving a legacy with this decision, a personal mission statement is made. This could then be sent out to those close to you as a guide of how to go about your wishes when the time comes. A website feature may include sharing their ideas and opinions with each other. This could help avoid conflict between family members during the grieving process.

Life After Death Figure 13: Scenario 2 Illustration

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SCENARIO 3 Interactive Will Kit This Will Kit is about stripping down the clinical process that traditional will kits take. The official documents are clearly presented and detached due to its lawful nature. As a consequence, quite ironically there is a lack of emotion for such a highly emotional and loaded topic. Thus there is a need for this procedure to be more people friendly, and inviting as a point for discussion. This hands on Will kit is helping people engage with their loved ones on their wishes. This kit provides a structure to spark dialogue which other can be daunting and questions difficult to bring to the surface. The framework is open enough that one player while playing the game there is room for family members to ask further questions to continue to deepen the dialogue. *Alternative thought - What if the contents of the will were unconventional? For example a chef with secret recipes or the writer with unfinished pieces of writing.

SCENARIO 4 Redefining Lineage Social responsibility towards fellow humans is what organ donation should be about. However it is philanthropy that is the current method of promoting this concept. I propose that we are too attached to a own ancestry and seek this sort of connection with others to behave in a selfless manner. Our legacy is usually within our family lineage, it follows our genealogy, how can we expand this?

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This service is about connecting with the person who receives your organ. Redefining lineage is about your legacy being passed down not just to your direct family but by a person who may receive your organ. Having never met each other this explores how you can make a special connection with a tangible object. It could be something made by an organ donor that gets passed down to the potential recipient. This bond will make being an organ donor more meaningful.

“Man is an intelligence merely in service to his organs” Aldoux Huxley

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SCENARIO 5 Provocative Game This game is about demystifying the idea that the materiality of your body must be dealt with. This could be driven by the concepts of degradation and use of the body as a resource to the community and the environment. It can feel uncomfortable to think of yourself as a spare parts to someone else, turning into fertiliser, or heating someone’s swimming pool. Perhaps it is about making the idea fashionable, investigating the appeal factor. This interactive artefact is hands on and provokes the audience to talk about the idea of having a concern for the afterlife of our remains, and building this accountability. Taking charge of this taboo topic requires an edgy outlook which the game can foster. This task proposes how we can use our materiality to its best potential by exploring use value and exchange value. This scenario uses the time frame of a speculative future to draw on concerns for our present actions. The aim is to enter an extremity and perhaps an exposure to this puts the present case in perspective. The feedback on this was for the players to insert their own names to make it more personal. Also to prompt an opinion through a multiple choice options at the end of the scenario.

EXCHANGE VALUE The exchange rate of Swedish strawberry blonde hair is on the decline. The Borg family is worried about their future investments. Technology has improved to an extent that lab grown hair is becoming a cheaper option to consumers. Should the Borg’s sell the DNA of their hair to this company for a payout and lose the 650 year legacy of this finely bred hair?

SMART INVESTING

Figure 13a, b, c: Scenario 5 Collage

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Times are tough but Hugo has faith. He feels that the payout is worth it as once he marries his fiancé, her family’s 20 20 vision eye bank is sure to secure the future of his children.

TWIN SWITCH Mina died in a freak vespa accident a year ago. She has left her ex-partner in great debt and he has been fighting a legal case against these liabilities.

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Minaâ&#x20AC;&#x2122;s identical twin Sarita was born with severe brain damage in a comative state and her parents took the initiative to keep her on life support as backup biological material for Mina in the future. They did not voice this intention as they were not able to afford a private transplant unit. Mina has now died at 35, whilst Sarita is stable and likely to live on for some more decades. Minaâ&#x20AC;&#x2122;s ex-partner is not willing to financially support Sarita as there was never an emotional connection developed within the family.

LIFETIME WARRANTY

INHERITANCE Lara’s mother has had an injury from her body pump aerobic class she teaches, previously a professional body builder. She can no longer walk. Unfortunately, due to this injury Lara’s mother has lost this muscle and has started putting on a lot of weight, unable to maintain her past fitness. This is devastating to the future of the family’s assets.

A LEGACY TO LIVE ON

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Lara son, Yusuf is training to participate as a triple jumper in the Olympics. She was dependant on the inheritance of her mother’s muscle resources to push advance Yusuf’s chances in the selection process. This fallback of his grandmother is now detrimental to his career. The Olympic rules are very clear that the only organ and tissue transplants permitted have to be within your own family.

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SCENARIO 6 Chipped Card This scenario is about providing the registered donor with a voice when they have deceased and unable to speak for themselves. It addresses the issue that when family members are asked they are highly emotional, and a purely intellectual response may not work. Rather hypothesising that a highly human personal response may help a family empathise and understand their family members wishes. Fulfilling their legacy could be an easier way to cope over altruism at a difficult time. - notion that everyone comes to the same agreement with different motivations. The chipped card is about creating and storing a testimonial about your personal motivation for registering as an organ and tissue donor. This could manifest as a video, handwritten letter etc. Stored onto your organ donor register card, at the time of death the organ transplant team can unlock this information and allow your family and friends to view it. Not to replace the role of the donor coordinators factual information, this will allow for your next of kin to see it from your perspective.

SCENARIO 7 App for nominees The attitudes of your family and friends are at the core organ donation. Registered yes or not, it is the family â&#x20AC;&#x2122;s consent which has the final call. This concept is about instilling that sense of duty to have an understanding of the system.

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At the end of the organ and tissue donor registration form, you nominate 5 people who are likely to be the ones making this decision on your behalf. An app is sent out to these loved ones about becoming a well informed nominee. This could take the form of a myth busters quiz which addresses the many misconceptions the public has on this topic. Also common fears of the organ donation process. The most prevalent of these are sent to the organ donor to help structure conversation about their wishes. Thus the weight of the conversation may be lifted off the personâ&#x20AC;&#x2122;s shoulder and everyone enters the conversation abreast of the facts.

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Figure 14: Sketchpage 1 Figure 15: Diagram 1 (opposite page)

Organ Donor: Nominate your close family and friends to receive a link to blahblah blahblah. It is developed to help start the conversation of providing consent and information about the Australian organ donation system. * Nominee 1 First Name: * Nominee 1 Email Address:

Integrating family into the registration process.

* Nominee 2 First Name: * Nominee 2 Email Address: I would like it to be sent to my email

Nominates family members who should receive a link to information.

Organ Donor:

Chance to explore the system and facts online.

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Organ Donorâ&#x20AC;&#x2122;s Family:

Comes to understand that it is imperative for their loved ones to be aware of their decision.

The Family: Is able to have a well informed conversation.

* In the case of brain death of organ donor and suitable for donation.

Organ Donorâ&#x20AC;&#x2122;s Family: Able to respond better in the highly stressful time.

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Figure 16a, b, c, d: Qualtrics Quiz

QUALTRICS QUIZ This quiz is not just about reiterating the facts but targeting the family themselves. That touchpoint of simply receiving this quiz calls out to the importance of being a well-informed nominee. Initially, I was unsure whether it should be a difficult quiz or apparent answers and it simply about consuming the information. To work around this conditional questions were incorporated however this could prove frustrating to the audience if they are asked extra questions due to previous incorrect answers. Trialling the quiz resulted in people getting all the answers correct. This in turn could come patronising if the answers are too obvious. Additionally they felt as though they were completing a survey, which is never an enjoyable experience.

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YES, I wish to

donate

NO, I wish to not

Prototype 2: Interactive/ Animated Infographic

Registration allows you to specify the organs you wish to donate.

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to donate o not donate

Figure 17a,b: Animation Illustration

donate

Personas ELDERLY I have heard about organ donation on the news but now I am too old. Suffering from diabetes too there is no point registering as my body will not be good enough to save another person’s life. Feels comfortable talking to their GP about their health. I may write it into my will if I go ahead.

UNSURE UNIVERSITY STUDENT I have just registered as an organ donor when I received my full drivers license. If it weren’t for being asked I probably would not have thought about it. I am in my early 20’s and think I have many years to live, this decision has time. Connected to the internet, using Facebook and Twitter on a daily basis. NEWLY MARRIED Growing up in a family not afraid to discuss issues around death and dying, Sally was in fact lectured by her parents about organ donation. They also made their wishes very clear to her so that she would be prepared, furthermore assuring her that they would do the same for her. However, now pregnant and living with her partner Ben she has to this conversation with someone who has never thought about organ donation and finds it rather squeamish.

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TRADITIONAL PARENTS Death is a taboo topic that is never discussed, particularly not with the children. Organ donation is something that Steff has heard about on the television. She is also reluctant towards organ donation as the funeral process has great importance and fears an open casket funeral may not be possible.

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Figure 18: Business Model Canvas

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1.1

1.2

1.3

You cannot be be ‘too old’ to donate your organs. People in their 80’s have succesfully saved people’s lives.Those over 80 have donated organs.

Those under 16 can also donate. Unable to be on the register, it is important to talk through your intentions with your parents

Never disregard your family members due to age, the transplant professionals decide, as they take your past medical history into account.

5.1 1

The medical team treating is completely separate from the transplant team.

5.2

Individual

The transplant team are on notified of the possibility o donation after a person ha been legally declared dead

Registration

No Action

Time of Death

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3.1 You can donate the following: Organs - kidneys, heart, lung, liver, pancreas, intestines Tissue - cornea, bone, heart valves and skin.

2.1 Most religions are very supportive of organ donation as it is the act of saving another persons life. These include Buddhism, Catholic Church, Judaism, Hinduism and Islam.

2.2 Measures can be taken to ensure that your religious values are respected. If you are unsure talk to your local faith centre.

3.2 Registration allows you to specify the organs you wish to donate. Your wishes will be strictly adhered to.

3.3 * Find out what (insert name)’s intention was to understand their decision.

4.1

The most common circumstance to donate your organs is brain death Brain Death is when the brain stem stops working due to loss of blood flow and oxygen to the brain.

4.2

There is extensive testing done by multiple doctors to ensure this is t case.

No one in history has woken up fr brain death. It is different from a coma where the brain has a possibility to heal itself.

Figure 19: Myths for Animation

nly of as d.

o h. m d

y the

rom

Families ultimately authorise donation, (insert name)â&#x20AC;&#x2122;s registration with us is not enough. Legally the responsibility is in your hands.

6.2 40% of Australian Families deny consent to organ and tissue donation.

6.3 Primary reason for this is not knowing the intentions of their loved ones.

6.4 Donâ&#x20AC;&#x2122;t depend on your will, chances are your family would not have accessed this at this point.

8.1 Your body will be treated just like any other surgery with respect. The body will not be mutilated.

8.2 The Organ and tissue donation doesn't interfere with having an open-casket funeral. The donor's body is clothed for burial, so there are no visible signs of organ or tissue donation. For eye donation, an artificial eye is inserted, the lids are closed, and no-one can tell the difference. For bone donation, artificial bone is inserted where bone is removed. With skin donation, a very thin layer of skin similar to a sunburn peel is taken from the donor's back.

Family Consent

Great care is taken to maintain strict anonymity between the family and the recipient. Contact can be made via letters.

Your family does not have to pay for the cost of the surgery.

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you m

6.1

Autopsy

Australia has some of the worldâ&#x20AC;&#x2122;s highest organ transplant success rates.

9 Y

Blood Matching/ Transplant

N Your family will be supported by DonateLife coordinators and consellors through this process.

Successful Transplant

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Autopsy Working with Animators Website Cards Final Proposition This chapter fleshes out the project by focussing in on the stakeholders. It also includes collaboration with animators and how this process has developed.

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Working with Animators

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Meeting with the animators for the first time was interesting. Communicating without knowledge of their terminology was challenging. I explained the project outline through the business model canvas and a flow chart. Gathering their thoughts and knowledge of how long animated processes take, whether is it feasible. These are issues I wanted to dive into before the refinement of the idea meaning it is not difficult to make changes. Decided to go for an approach where the flow chart from an Individual to a successful transplant takes the background, whilst the ten myths that pop up through hovering buttons. These animations go for approximately 5 seconds each. Communicating with Huw, the coder I was able to discuss mediums of communication. Flash apparently doesnâ&#x20AC;&#x2122;t work well with phone or Ipads, so it was decided that laptop web and off web would be the best way to go. This is also suitable for the multitouch monitor that I am using for the exhibition. I started to understand the limitations and abilities of the software. After some basic layout sketches, it was decided that we do some mock prototypes of the interaction before the animations are completed. Focussing on subtle mouse events such as hovering and mouse off I wanted to ensure the interactions are both functionally seamless and playfully sound. I have decided to stick with the body painted theme and paint on the various buttons onto my model. He will be doing various poses in holding the animation frame to give it a dynamic component.

Life After Death Figure 20a, b: Some sketches that were given to the animators to communicate the different myths.

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Figure 21 a, b, c: Working with Tas and Nikhil

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“how many more photos?”

Great care is taken to maintain strict anonymity between the family and the recipient. Contact can be made via deidentiﬁed letters.

How?

About

Figure 22 a,b, c, d: Website concept development

Website The purpose of the website is to lead the personal conversation with the cards towards a public platform of knowledge. The website aims to integrate the family bonding with the discovering the real facts of organ donation. That isn’t to say that the conversation will come to a halt, rather be driven by facts from opinions. For example, debating upon the definition of brain death when asked on the cards, turning to the website then offers a continuation of discussion to see if there answers are correct.

Life After Death

Additionally, the website has to work on its own in isolation from the cards. Some people may see the website link on the cards and go straight there or others may have received the link through a friend having never looked at the cards. Initially the plan was to link up external sources to the site, however all the information that I present is already very accessible on the internet. The difference is that no one casually decides to search for ‘myths of organ donation’. That is why the visual engagement is key to the information to be passed around.

Figure 23: Website concept development 2 (Opposite Page)

To visually engage the audience it was chosen to juxtapose the photograph and the animation. Animation is able to show organ donation graphically without (it is hoped!) causing people to feel squeamish. The body keeps the animation from being too detached. Looking down on the animation, the figure is more personable and is taking the journey with the audience.

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ENTER

Individual Registration Time of Death Family Consent Autopsy

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Transplantation

Animation

Still image from cards which link to animation

Life After Death Explore the facts of organ donation as the animation debunks some common misconceptions.

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Take this opportunity to discuss your wishes with your loved ones.

Click to begin

Figure 24: Website concept development 3

Families ultimately authorise donation, registration with the organ and tissue authority is not enough.

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Legally the responsibility is in your hands. Primary reason for this is not knowing the intentions of their loved ones.

Families ultimately authorise donation, registration with the organ and tissue authority is not enough. Legally the responsibility is in your hands. Primary reason for this is not knowing the intentions of their loved ones.

Life After Death Figure 25a, b, c: Cards Development

Cards Making the decision of how the cards link to the animation is one that has taken some thought. First thing to pop up into peopleâ&#x20AC;&#x2122;s minds these days are QR codes. However just talking to those around me, these are not frequently used by people as they require too many touch points. Opening up an app, then scanning has proved to be simply too much effort.

Lastly, is the usb which is a separate physical artefact. If designed well with appropriate material choices a usb can not only hold the data for the sake of conversation but go beyond this and serve as a utility for someone in their day to day life. It must be kept in mind that technology is continually evolving and the usb simply acts as a portal to the animation. After being introduced to it, there is the online website to refer to. As a consequence the usb and the presence of the file can act as a reminder for the communication that occurred.

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The second option was to have the interactive animation only on the web. This would require having someone to punch in the url themselves after viewing it on one of the cards in the box. Similar to the QR, it raises the question whether one would bother and secondly, this webpage is intended to be seen on a laptop by a family, rather the insular nature of a mobile phone.

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Final Proposition The final proposal is a piece of visual communication that aims to instigate a structured conversation around organ donation amongst families. Visually engaging, it should act as an ice-breaker and take pressure away from the individual family member to bring up this uncomfortable/confronting topic on their own. By focusing on everyday life and not a time of grieving, we are able to keep the visuals playful and thereby create a more relaxed environment for discussion. Currently donor coordinators are faced with families who enter the process unsure of their loved oneâ&#x20AC;&#x2122;s wishes regarding organ donation. Engaging in family discussion early allows a better understanding of each memberâ&#x20AC;&#x2122;s decisions to take place, improving the donation process. This kit is expected to take the form of conversation cards with an accompanying website. The cards aim to facilitate the sharing of post-mortem wishes amongst loved ones via provocative questions. They spark interest in the organ donation system with some questions focusing on opinions whilst others test factual knowledge. This interest then leads the family to an interactive website where information is revealed through animations, each linked with a card. This provides a sense of closure to the discussion by dispelling common misconceptions, whilst also informing the families of their rights and support services available. The kit could be distributed with organ donation registration forms, at the post office, via the DonateLife website or with a driverâ&#x20AC;&#x2122;s license renewal. Families could also recommend the kit to friends. Printed on simple card, the proposition is economically viable. Hence it can be funded by relevant third parties such as the Department of Human Services or the government body DonateLife.

Driving License Renewal Organ Donation Registration Form Newsagent DonateLife Website Life After Death Website

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Shares cards with family

Explore Website

Participate in conversation

Figure 26: Final Proposition

Life After Death Figure 27a, b: Cards for testing

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Blood Matching Exploratory Design Games Experience Prototyping Findings A key evaluative method of exploratory design games is used to gauge whether the illustrations are communicating the myths of organ donation effectively. Experience prototyping is used for the both the cards and website as a whole experience. The aims of constructive conversation, debunking the misconceptions and finding out the intentions of loved ones is the criteria used to iterate towards the final prototype.

97 Life After Death

Exploratory Design Games

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I decided to use exploratory design games as a method to see whether the illustrations are depicting the project concept. For the set of cards it is really important that the one image directly relates to the different myths, as the text may in fact be a question that spurs conversations rather than an obvious fact to be understood. Also if the style of the illustration appeals to people and draws the right emotions from people.

the competitive nature ensured that the participants did not over think what they saw

To conduct the game I printed out two sets of cards that contained a mixture of illustrations and the corresponding text. I asked them to get into two teams and mentioned that it was the competition. The aim of the game to them was to see which team was able to complete the task in the shortest amount of time. It went for about ten minutes and was fast paced. I felt that the game was successful as both teams got the mismatched the same three illustrations. As a debrief I asked what didnâ&#x20AC;&#x2122;t make sense to them. These are recorded on the next page. The competitive nature ensured that the participants did not over think what they saw. Everything was instant and the goal was diverted to time versus what I wanted achieve. Everyone who was involved in this game session was in the age bracket of twenty two and twenty six. Next time I would probably use a range of age groups. This may draw upon different levels of understanding towards the topic of organ donation.

Matching Text: Your body will be treated just like any other surgery with respect Participants Observation: “The lab coat of the third guy . looks like a lab quote so I couldn’t understand the flow”

Matching Text: Families ultimately authorise donation, (insert name)’s registration with us is not enough. Legally the responsibility is in your hands. The primary reason for this is not knowing the intentions of their loved ones. Participants Observation: “It looks like the families are having a look at the organs that have been taken out of someone”

Figure 28a, b, c: Exploratory Design Games Cards

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Matching Text: You can donate the following: Organs - kidneys, heart, lung, liver, pancreas, intenstines. Tissue - cornea, bone, heart, valves and skin. Registration allows you to specify the organs you wish to donate. Your wishes will be strictly adhered to. Participants Observation: “Generally I don’t understand what is going on” and “What is the pile of organs doing on the ground?”

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Figure 29a, b, c: Exploratory Design Games Activity

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Life After Death Figure 30: Experience Prototyping Kit

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Experience Prototyping

This kit contained a scenario: â&#x20AC;&#x2DC;Someone in the family is thinking about registering as an organ donor and wants to discuss this decision with the familyâ&#x20AC;&#x2122;. Inside also included a set of conversation cards, one of them including a link to the website www.lifeafterdeath.asn.au. Lastly, a feedback sheet with ten questions that are designed to both analyse the overall objective of the project and the small design details to create a refined artefact. All this was sent through post to further remove myself from the testing, if anything I felt as though I would talk too much about the project if meeting them in person. Sampling families to user test I tried to ask people who donâ&#x20AC;&#x2122;t know much about the project, so they come in with fresh eyes and not have a preconceived idea of the purpose. The feedback was gathered over the phone as this was the best way to get into the qualitative details of emotions and an understanding the conversation if there was any at all! My primary questions are if they discovered something new about a family member, and whether they learnt anything from the material provided.

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The moment has come to put the conversation to the test. The ideal way to test this was to simulate a family conversation the way it would occur. To create the most natural experience, it was decided that it is best if the researcher is not present. I hypothesise that my presence would result in forced conversation and that I would be looked upon to facilitate. To work around this an activity kit was created.

JARRAD + DAD Conversation: 15 Minutes

"Yes, you need support to cope better" “I’m the kind of person to supress these moments and forget about them” - regarding not wanting to recieve letters from a donor recipient Figure 31: Experience Prototyping Jarrad

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Figure 32: Experience Prototyping Shubham (Opposite Page)

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Discovery about family members: Jarrad’s dad learnt that his daughter is registered to be an organ donor. Jarrad learnt that his dad was a big supporter of the Fred Hollows foundation, inspired by the fact that your eyes are so small yet can bring great significance to someone’s life. He also was interested in donating his kidneys had an employee at work who required a transplant. Feedback: - Compelled to see the website, however thought the cards needed a hint that the answers are featured there. - Question about the cost of surgery - is it to the recipient, or for the donor family? - Found the unidentified letters an interesting question as could see multiple opinions. - Felt that moving from the cards to the website would disrupt the flow of conversation - thought they would have to move from the living room into the study.

“Most people dont discussed death let alone what happens after death to your body and all the different processes, through this we should raise the awareness”

SHUBHAM AND FAMILY Conversation: 45 Minutes Discovery about family members: At the end of the activity, they talked about who would want to donate. The father affirmed that he was going to register the very next day. One family member mentioned that they had experienced difficulties bringing this topic up with others. Learning about the system: Discussed the possible reasons why letters would be unidentified. Talked about how their funeral processes might be affected if someone in their family was to donate Feedback: Quality of treatment - complicatedly worded, needs to be a bit simpler, very long question

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“I think that it will be touching no matter they have written their name or not” - regarding unidentified letters

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Figure 33: Experience Prototyping Andrew

“Yes, I believe someone in our family is on the organ donation registry. It would be a difficult decision to donate deceased family members’ organs. I would not have an issue as long as it didn’t cause significant family tension.” “I felt that the questions had a great sequence with great questions.”

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ANDREW AND MOTHER Conversation: 20 - 30 Minutes Learning about the system: “I did feel compelled to go to the website as I noticed how little I know of the facts.” Not sure exactly that I fully understand brain death. Feedback: I would add more colour to the question samples. Couple of grammar issues: Would your family like support if a loved one’s body is donated? Are you aware of any family member’s intention/desire to donate?

KAVYA AND FAMILY Conversation: 45 minutes Discovery about family members: - Had briefly talked to siblings about it before but not the whole family together with our parents. - Dad didn’t want the letters as it would bring back memories of loved ones.

“The pink on the cards reminded me of a fleshy colour.”

Learning about the system: - Wanted to know the cost of a transplant - website doesn’t provide this information. Feedback: - Perhaps make the cards larger, more of a game size. - Good questions that you wanted to keep going with the topic. - Would keep the cards for the future.

“It was not too tedious”

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“If we didn’t know (what the person wanted), then we would revert to not donating.”

Figure 34: Experience Prototyping Kavya

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Figure 35: Observing Exploratory Design Games

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Findings

Therefore, the variety in questions was the strong point, allowing a range of subject matter to take the limelight. The downfall with the cards was the confusing wording. This can be attributed to the assumed knowledge that was wrongly presumed. Some people needed to explain the meaning to other family members. Thus it is evident that they need to both be simpler and perhaps more direct. Additionally, the card that mentions the website needs to mention explicitly that the answers for some questions are featured through the animation. The visuals had mixed reviews. They appealed to the younger audience, but didnâ&#x20AC;&#x2122;t offend anyone. It was suggested that the cards should be larger, and this would work well given that some questions were too vague and required further explanation. This positive response and constructive feedback has shaped the things to work on for the final refinement of the artefact.

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Overall the experience prototyping was successful. The primary goal of a meaningful conversation was fulfilled amongst all families. Not all family members learnt new things however appreciated that there was the time taken aside to sit down and have a discussion. Whilst interviewing they had mentioned that previous times the topic had come up it was very brief, and not all avenues of thought were discussed. The structure of the facilitation was commended, and no one said that the conversation got heated.

Transplantation Final Design

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Refer to the attached booklet for the final design.

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Eulogy Conclusion Personal Reflection

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Summarising the learnings of this honours year, and where I want to go next with Industrial Design. The conclusion of the project is a summary of research findings, the limitations and future scope.

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Conclusion

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RESTATING ISSUE On the surface, the word death seems to be absolute, yet in fact it is much more than a defined moment. It is surrounded by a plethora of decisions and considerations beforehand whilst alive, and on the other side are post-mortem decisions. Tied up with religion and a variety of opinions regarding someone’s existence, it is not an easy matter to face. No wonder anything regarding death is perceived as taboo by society, needless to say; organ donation is one of them. Ever complex in its nature it is quite literally about giving life to a person. This makes organ transplantation both an impending topic in its magnitude of potential results and sensitive in procedure. The power that families possess in providing consent shows the conversation amongst loved ones is not evident. RESEARCH FINDINGS This lack of communication consequently results in highly stressful situations where families have to make these decisions whilst grieving and without knowledge of their loved ones wishes. Some who have donated their loved ones body feel that were not given adequate time, and also that they didn’t have a good enough understanding of the system. Misunderstandings could be attributed to the many myths around organ donation such as the brain death criteria. The nature of organ donation is highly selective and furthermore time dependant, thus it was proposed that choices made on a person’s life shouldn’t come down to a conversation with a doctor. The position of this project is that doctors and donor coordinators are there to aid and inform however it is our responsibility to initiate and voice our wishes earlier. Furthermore, the project aims to target the families

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SOLUTION The solution is a conversation starter kit about the organ donation system for Australians. The kit contains a set of eleven conversation cards and a link to a website. The website features an interactive animation and provides answers to some of the questions by dispelling the common myths. The style intentionally deviates from the very sanitised information that current websites provide, the cartoon can afford to make light of the matter as the target audience is families and loved ones in an everyday situation. Note that it is not for those experiencing grief. This kit makes its way into the family home by either a family member registering and receiving it from the organ donor registry as part of an initiative; or as part of an information kit to aid their decision making, if they are considering registering. An individual then comes home and presents this as a personal gesture to their family. The aim of this is not to convince people to register as an organ donor themselves. This response could well be the outcome however it takes the angle that ultimately all suitable families are asked for consent and knowing the individualâ&#x20AC;&#x2122;s intentions supersedes the registry. Lastly, these conversation cards shouldnâ&#x20AC;&#x2122;t be misunderstood for marketing material to get more donors on board. OUTCOME These cards were designed and iterated through exploratory design games, to reveal what people already understand of the topic. This method also was successful in testing the appeal on the visual style of characters. The full prototype was tested using experience prototyping, simulating a real family conversation for those who hadnâ&#x20AC;&#x2122;t before. This design method provided great insight into dynamics of conversations and whether it was perceived to be a useful and practical tool for the family environment. The feedback

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themselves rather than the current marketing material which places great reliance on individuals to bring up these conversations on their own.

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was helpful on tiny details of communication design elements that needed improvement and also the larger picture of whether they learnt anything about other family members. Every participant learnt something new about another family member, however there was discrepancy in whether they learnt something new about the system itself. Regardless of this, every family said that they had not sat down and communicated about this topic with detail and they were glad that the conversation was initiated LIMITATIONS OF RESEARCH Although this project was successful in producing conversation, there are some limitations to the research. Conducting the testing I sent the activity kit out to those who were interested in my project so it cannot be assumed that all those who received it would be of such an open nature. Additionally, it is not in my timeframe to be able to presume that those families who did participate, would then provide consent to the wishes of their loved ones. Another limiting factor in testing is that we cannot wait till people die and how their families react. We can only gauge whether they understood the facts and if the conversation was productive in the sense that they discovered the intentions of their loved ones. EXTENDING THE SCOPE OF THE PROJECT If this project were to continue, it would also look into how this conversation kit could integrate into the current DonateLife events and school resources. Furthermore, research is required to investigate the production costs of the product and system in order to make it viable to be funded by a third party. The project would have to look into how the conversation amongst families could be sustained after initially interacting with â&#x20AC;&#x2DC;Life After Deathâ&#x20AC;&#x2122;. There were some who were unsure of their choices after the conversation. This confusion is understandable if they were visiting the idea of organ donation for the first time, but further work is required on how this is then revisited to ensure that the choice is not left up in the air. Lastly, the conversation card concept model could be applied to other taboo topics, a template could be designed for experts of other field to utilise as a platform.

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I had previously not seen the interelationship between industrial design and communication design. This project is highly visual and it is the communication design gap that the animations and the cards address. They have very little value is they werenâ&#x20AC;&#x2122;t visually engaging as it is integral to setting the mood. In the process of reviewing my thesis writing I shocked myself to see that some of the statements I had previously said were quite wrong. This itself shows how complex this system is and that education around the loaded topic of organ donation is imperative. Furthermore, my writing skills have improved ten fold. It has also proved be a process beyond documentation and a real thinking tool. Whilst designing, talking and drawing, you can get away with being vague, and it has that interpretive nature. Writing on the other hand, you have to much more defined, and if it isnâ&#x20AC;&#x2122;t, then it is obvious that there is more to think through. Furthermore, during this research year, designing has taken a different route. It is the thorough and in depth research that comes to a point where the gap is clear and and waiting for you to address. More than anything I have developed an interest for user testing. I enjoy picking up the incidents od misuse and suprises that come with trying something out in context and discovering all the things that perhaps werenâ&#x20AC;&#x2122;t intentionally designed. It goes to show the human side, the side that our designs aim to connect to. In the end I have 11 questions on a set of cards, I had to leave my ego aside which was after a grand exit to the course with a well crafted product. It is the best decision I have made, all four families who participated in this user testing may have been doing it to help me out. However now they have had the conversation which will hopefully save them the alot of grief in the future.

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Personal Reflection

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Legacy Bibliography Credits

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Fix the page alignment

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BIBLIOGRAPHY Blechman, E. A., Olson, D. H. L., Schornagel, C. Y., Halsdorf, M., & Turner, A. J. (1976). The Family Contract Game: Technique and case study. Journal of Consulting and Clinical Psychology, 44(3), 449-455. doi: http://dx.doi.org/10.1037/0022-006X.44.3.449 Brandt, E. (2006). Designing Exploratory Design Games - a framework for participation in participatory design? Paper presented at the Participatory Design Conference, Copenhagen. Braun, V. (1999). Breaking a Taboo? Talking (and Laughing) about the Vagina. Feminism & Psychology, 9, 7. Burt, E. L. (2011). The relationship between quilting and wellbeing. Journal of Public Health, 34, 54-59. Cantarovich, F. (2002). The organ shortage: a social paradox to be reversed. Transplantation Proceedings, 34(8), 3031-3034. doi: http://dx.doi.org/10.1016/S0041-1345(02)03580Clift, S. (2012). Creative arts as a public health resource: moving from practicebased research to evidence-based practice. Perspectives in Public Health, 132(3), 120-127. DonateLife. Organ and tissue donation facts. from http://www.donatelife.gov.au/discover/ facts-and-statistics Horin, A. (2012). Tough Conversations Worth Having The Sydney Morning Herald. House, I. A. T. (2013). Festival of Dangerous Ideas 2013: Panel - Death Gone Wrong. Jill Riley, B. C., Clare Morris. (2013). The benefits of knitting for personal and social wellbeing in adulthood: findings from an international survey. British Journal of Occupational Therapy, 76(2), 50-57. Kastenbaum, R. J. (2012). Death, Society and Human Experience (C. Campanella Ed. 11th ed. ed.): Pearson Education. Krupar, K. R. (1973). Communication Games. United States of America: The Free Press. Leckey, J. (2011). The therapeutic effectiveness of creative activities on mental well-being: a systematic review of the literature. Journal of Psychiatric & Mental Health Nursing, 18(6), 501-509. doi: 10.1111/j.1365-2850.2011.01693.x Lee, J. R. (2011). Decompiculture + Decompinauts. from http://infinityburialproject.com/ tag/decompiculture . Letâ&#x20AC;&#x2122;s talk about dying - Peter Saul. (2013), TED-Ed. Mill, T. A. (2013). My Gift of Grace - A game that helps people talk about death. Miller, J., Donner, S., & Fraser, E. (2004). TALKING WHEN TALKING IS TOUGH: TAKING ON CONVERSATIONS ABOUT RACE, SEXUAL ORIENTATION, GENDER, CLASS AND OTHER ASPECTS OF SOCIAL IDENTITY*. Smith College Studies in Social Work, 74(2), 377-392. Mourant, A. (2011). Should excess heat from cremation be recycled? The Guardian. Retrieved from http://www.theguardian.com/education/2011/apr/25/cremation-excess-heat-research Oberender, F. (2011). Organ donation in Australia. Journal of Paediatrics and Child Health, 47(9), 637-641. doi: 10.1111/j.1440-1754.2011.02176.x Radecki Breitkopf, C. (2006). Perceived consequences of communicating organ donation wishes: An analysis of beliefs about defending oneâ&#x20AC;&#x2122;s decision. Psychology & Health, 21(4), 481-497.

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Rubin, S. (2011). Tackling Taboo Topics: Case Studies in Group Work. Social Work With Groups, 34(3-4), 257-269. doi: 10.1080/01609513.2011.558824 Stickdorn, M., & Schneider, J. (2010). This is Service Design Thinking Amsterdam: BIS Publishers. Vaajakallio, K., & Mattelm채ki, T. (2014). Design games in codesign: as a tool, a mindset and a structure. CoDesign, 10(1), 63-77. doi: 10.1080/15710882.2014.881886 van der Stege, H. A., van Staa, A., Hilberink, S. R., & Visser, A. P. (2010). Using the new board game SeCZ TaLK to stimulate the communication on sexual health for adolescents with chronic conditions. Patient Education and Counseling, 81(3), 324-331. doi: http://dx. doi.org/10.1016/j.pec.2010.09.011 Varadarajan, S. (2010). My First Period. from https://fifthgoal.wordpress.com/2010/09/17/ my-first-period/ Video: Mushroom Suit. (2013). [Brief article Video file]. Vincent, A., & Logan, L. (2012). Consent for organ donation. British Journal of Anaesthesia, 108(suppl 1), i80-i87. doi: 10.1093/bja/aer353

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IMAGE CREDITS Page 2, FIGURE.1 Visiting permaculture practises in Ganeshpura Page 14, FIGURE.2: Body Painting Page 24, FIGURE.3: Infographic 1 Page 27, FIGURE.4: Infographic 2 Page 30, FIGURE.5a, 5b, 5c: My Gift of Grace Trial Page 32, Figure 6a, 6b, 6c: Organ Donation Registration Page 36, Figure 7a, 7b: The Will Kit Page 39, Figure 8: DonateLife Brochure Page 40, Figure 9: Field of Practice Page 42, Figure 10: Silver Platter used for death ceremony Page 53, Figure 11: Infographic 3 Page 54, Figure 12: Scenario 1 Illustration Page 57, Figure 13: Scenario 2 Illustration Pages 61, 62, 63, Figure 13a, b, c: Scenario 5 Collage Page 66, Figure 14: Sketchpage 1 Page 67, Figure 15: Diagram 1 Pages 68, 69, Figure 16a, b, c, d: Qualtrics Quiz Page 70, Figure 17a,b: Animation Illustration Page 72, Figure 18: Business Model Canvas Page 74, Figure 19: Myths for Animation Page 79, Figure 20a, b: Some sketches that were given to the animators to communicate the different myths. Page 80, Figure 21 a, b, c: Working with Tas and Nikhil Page 83, Figure 22 a,b, c, d: Website concept development Page 84, Figure 23: Website concept development 2 (Opposite Page) Page 86, 87, Figure 24: Website concept development 3 Page 88, Figure 25a, b, c: Cards Development Page 91, Figure 26: Final Proposition Page 92, Figure 27a, b: Cards for testing Page 96, Figure 28a, b, c: Exploratory Design Games Cards Pages 98, 99, Figure 29a, b, c: Exploratory Design Games Activity Page 100, Figure 30: Experience Prototyping Kit Page 102, Figure 31: Experience Prototyping Jarrad Page 104, Figure 33: Experience Prototyping Andrew Page 106, Figure 35: Observing Exploratory Design Games

All Images are retreived from personal documents All animated illustration are the work of animators: Tas Smith, Nikhil Markale Coding of the website done by Huw Millar

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