(Tuesday) 09:15 - 10:15
Niki DeGaetano: Beyond the End-of-Life Echo Chamber A DISCUSSION session Although numerous experts, death practitioners, and advocates are pushing the boundaries of
Niki DeGaetano: Beyond the End-of-Life Echo Chamber
A DISCUSSION session
Although numerous experts, death practitioners, and advocates are pushing the boundaries of death dialogue, I have observed a general tendency for end-of-life conversations to remain within this sphere. I pose that the public – everyday people – are the ones who need to be invited into these death discussions. Sparked from the realization that so many are unprepared to deal with the logistical and emotional questions arising at end-of-life, I am proposing “Beyond the End-of-Life Echo Chamber”, a live interview conversation with any willing audience participants. By sharing their personal experiences with death – as well as the questions and subsequent regrets that they may not have been adequately prepared to encounter – the hope is to generate a wide level of participation in order to bring a greater variety of voices, experiences, and stories to the table. Ultimately, the
These interviews would be conversations with participants who would sign up ahead of time to share their personal experiences with death and loss. Some of the questions I intend to ask include: During your experience with end-of-life, what information do you wish you had? What questions or decision-making points arose that others might face? What things, in hindsight, do you wish you knew then? What about your situation made you angry? How can we address these things moving forward? This list is in no way comprehensive; I anticipate adding many more questions to propel the dialogue.
At the end of the day, my intent is to facilitate organic discussion around death, getting the everyday person comfortable with it, and hearing the “hindsight” stories of those who have suffered a loss but – like many others – felt completely blindsided and unprepared for the barrage of medical decisions and situations that accompany the dying process. I also want to explore the philosopher Aristotle’s theme of dying as a part of life; using death to live well. I want to know what each participant might have learned about life, and how their perspectives shifted in light of their death experience.
If my proposal is accepted, I will create a webpage where potential participants can register in advance. If they do not wish to commit, they are free to view a shortlist of questions that they could review prior to the panel, and by so doing, feel more empowered and prepared to partake in the discussion. Of course, if art.earth has any preferred methods for reaching potential participants, I would happily make use of them.
I believe in the immense power of stories, especially those we hold closest to our hearts. My hope is that, by sharing them, we can become more comfortable with divulging our experiences with death. Even more so, I hope that we will eventually be enabled to have these conversations with our friends, family, and acquaintances, breaking out of the end-of-life echo chamber and learning to dialogue with the public, so that they are not caught unaware by the inevitable questions that arise at end-of-life.
Speakers for this event
One of the driving forces compelling me to initiate this proposal stems from my own end-of-life experiences. During my family’s first significant loss, we encountered so many situations for which we were not prepared. No one informed us of the minutiae surrounding topics such as: power of attorney, pain management, choosing memory care and hospice facilities, or telling a surviving spouse that her husband passed. Afterwards, I found myself growing exponentially angry that this had never been discussed; it was a taboo. My family never wanted to talk about it, and certainly, the general society never initiated these conversations, nor provided resources that would allow for a somewhat-informed encounter with the end-of-life process. Instead, we entered that process completely ignorant. No one discussed it with us until it was too late; we were slogging through it, waist-deep, and I fear my loved one suffered unnecessarily due to our forced learning curve. Later, I noticed this pattern being repeated among friends. They too were as lost as I was, and they expressed dismay at not being prepared, at not previously discussing these matters. Because I currently do not work in the death trade, I am comfortable identifying myself as “an everyday person” who seeks to expand the death discussion outside of the end-of-life circle. As such, I was immediately interested in your desire to “break the “expert table” model of panels and presentations” through the summit. Although I aspire to an eventual vocation as either a hospice chaplain and/or a death doula, I currently work in the advertising industry, which was my focus during my undergraduate studies. In my endeavor to shift fields, I earned a certification from the University of Vermont’s End-of-Life Doula program in December 2019. I am also in the process of pursuing my Master of Divinity with a concentration in healthcare chaplaincy. As another component to my foray into end-of-life, I was a hospice volunteer for six months. The patients I was honored to sit with reinforced my understanding of profundity in simplicity: the gentleness of touch, the silence of presence, and the power of companionship.
- Day 1
16.00 Opening day events16.00 - 21.00Opening day events including keynotesSpeakers: Bayo Akomolafe, Beatrice Allegranti