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Preset: Reimagine the end of life via organ donation

"Preset" uses organ donation as a way to create transitional moments and realization of one's own death.

Photo of Panisa Khunprasert
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While in many cases, the word transformations or transition moment may imply evolvement, but for this project these two words simply mean a behavioral change, whether it is a change from extreme sadness to celebration or from being outgoing to isolating oneself. There are many reasons why I am interested in these moments; stories from LiveOn NY, an organ donation center.

The idea that the donor’s family and donor recipients are encouraged to connect with one another surprises many people, including myself at first. It all started to make sense when I learned that LiveOn New York does not only save lives of patients waiting for transplantation but also rescues the deceased donor family from mourning and isolation. One of the most important things they do is to ask the donor’s family and the recipients to write each other a letter at a time when they feel they are ready to do so. Usually the recipient will write the donor’s family a letter and send it through LiveOn. Then LiveOn will contact the family and ask whether they are ready to accept the letter. Some families have a hard time dealing with their loss and wait for years until they finally contact LiveOn to say that they are ready to get in touch with the recipient. The reason is that they are still in a very fragile emotional stage; they do not know how to deal with their sorrow and take precautions with things that may trigger their sadness. On the other hand, some recipients feel deeply guilty and take years to start to reach out to their donor’s families. For example, a forty-year-old recipient who received an organ from a fifteen-year-old donor, took ten years before she finally wrote the letter because she did not feel like she deserved the organ. According to the staff, the moment the recipient and the donor family first meet is always very emotional and beautiful. Some families build strong relationships with the   recipients regardless of race or background. They symbolically become one big family. The family feels the joy of knowing that their loved ones gave many people a second chance to live, and some even feel that their loved ones still exist in these people.

In the United States, your wish to donate your organs are shown in the drivers' license you carry around. Thus if something happens to you, your wishes are clearly understood. In my home country, Thailand, we donate our organs to the Red Cross and are given donor's card that we supposed to carry around with us. However, if one day you decide to leave the card at home and something happens to you, your wish cannot fulfilled. The fascinating thing is that it is a physical reminder that you can die everyday. The act of never leaving the house without this card is a beautiful gesture of the awareness of impermanence. Donation card is a discrete reminder of your donation to Thai people and represents the no attachment to the physicality of your body. It represents an act of consciousness and honor. 

The donation stationary set is designed to glorify and dignify the organ donation process. It consists of a donor’s card, documents related to donation policies, and letter-writing stationary, with which the donor can leave testimonials to family or future recipients. The physicality of the set embraces the tactility experience of creating your meaningful death and communicating your final wish to your family members. The next step is to imagine how to virtualize the experience. 

When the donor enter brain-dead stage, donation is not always a pleasant experience for the donor’s family because they have to go through the documents and legal papers during a sorrowful time. They may find making big decisions stressful and perhaps not make the best or most rational decisions. 

Currently, in 2015, more than 120 million people in the U.S. are signed up to be organ  donors. In 2010, there were almost 2.5 million deaths in the U.S. Imagine if every one of those persons had donated. Of all the brain dead patients eligible for organ donation, family members refused in half of the cases. The number of families that give consent for organ and tissue donations to proceed jumps up from 50% to 80% when families know and have discussed the donation decision of their family member. According to a Behavioral Insights Team, individuals tend to go with the flow of pre-set options, or defaults, often regardless of whether the pre-set options maximize our individual or collective well-being: Making ‘yes’ as a default for the donor family; making pre-set predictions of the decisions. Together with the family every option is pre-set. Cremate or Bury? Mahogany or cherry casket? Donate or not donate? Pre-set does everything and no more second thoughts.  

Pre-set also selects only the most ethical, environmentally responsible, and economical service providers.  Support young blood designers or makers with curated selections of creative and beautiful artifacts related to funerals and memorials and make sure that your death is meaningful to others through organ and tissue donation. Encourage minimal ceremonial and artificial treatment to make sure that your death does not damage the earth with endless carbon footprints.  Pre-set wants to see the world without the fear of talking about death. This leads to another intervention under the same name. Pre-set is an application for people who want to  register and sign up for  organ donation and get full end of life services.

Pre-set app provides holistic products and services for users and their families to pre-make all decisions that they will face during the most difficult moments, thus allowing donors and their families to go through all the options together. By eliminating all the burden from the family, they can focus on the mourning process and recovering from sadness. The deceased will get to have their last wishes fulfilled and the donation center will receive the organ to help more transplant patients.  The donor signs up for the service after downloading the mobile application Pre-set. The donor  fills in the application and talks to family members about end of life choices in donating organs to medical needs. The family and the donor go through the registration process together. Information includes preferences for donation centers, hospitals, patient ID number, home address and emergency contact numbers. In addition, there are personality questions that the donor has to answer. The app will verify and analyze the data and send a confirmation email to the donor  to continue to the next step. The donor and the family will now see a list of questions and choices they have to make. For example, what are the organs that the donor wants to donate? Which religion practice or funeral service does the donor want? What should be done with the remains or the ashes? There is also a family care service that allows the donor to pass on the final word as time passes. The donor selects the family care service from the choices that are provided. The choices are curated for their personal preference and personality traits from the data the app received and analyzed earlier. If the donor decides to send a gift to the family after she/he dies, the details of the gift are selected: when should the gift be delivered, what message should be included, and what is the donor’s goal and true wish for the family? Pre-set will be the coordinator and the executor who helps to fulfill the  wish. 

Pre-set encourages donors to think about their collective responsibility to the future by supporting ethical and environmentally responsible service providers. Pre-set also provides curated design products like urns or altars that the user can scroll through, see the price, and make decisions with the family. Pre-set helps fulfill wishes for customers who are interested in alternative body decomposition. Pre-set’s team of professional and experienced funeral experts, help  sourcing the alternative services from all over the world.

Finally the donor will sign the pre-testimony, which is a summery of the choices of products and services selected. Legal digital testimony or final will is signed with the donor’s finger prints and the witnesses’ fingerprints. The choices are subjected to change over a period of time  in order to be fair to the vendors and to draw in more small startup funeral service providers to the system. 

What is a provocation or insight that might inspire others during this challenge?

Transitional moments, such as moments of breaking the silence, the moments of moving forward, or the realization of one's own death, may require some sorts of triggers. In organ donation, the moment that donor's family decide to connect to the organ recipients of their loved ones is the moment of transformation. The donation also represent the act of consciousness and honors for the donors.

Tell us about your work experience:

I am a recent graduated design student and spent a year working on a thesis titled Hereafter; remapping the landscape of of death and the way it is remembered.

If you participated in an End of Life Storytelling Event, tell us which Chapter or city you came from:

New York City

This inspired (1)

The Grieving Wall

1 comment

Join the conversation:

Photo of Louisa Liu

Thank for your sharing. This post attracts me a lot. The donor's family's organ donation can save one or more people's lives. We all know the family needs a great courage to make the decisions. But to think differently, organ donation is the extension of the life. At the same time, the need for organ donation is very forceful, so we also need to improve the awareness of people.