Humanizing our End of Life Experiences: Q&A with Shoshana Ungerleider

Physician and activist Dr. Shoshana Ungerleider founded the End Well Project as a way to make end of life experiences more human-centered. This media platform and annual symposium elevates the voices of diverse professionals, sparking a cultural shift in the way we approach end of life care.

Read on for our conversation with Ungerleider about the innovations she is pioneering in her field.

How do the negative connotations around death stymie conversation and, consequently, more innovative end of life care?

For the vast majority of human history we have actually been familiar with death. We cared for our family members at home, when they died – they were laid out in the parlor and we knew what rituals to perform. Throughout history, death was an expected occurrence; it was accepted and planned. Our cultural understanding began to wither about a century ago when death became more medicalized due to advances in science and technology. Through this overarching medicalization of death, the end of life has moved out of our collective consciousness and into the shadows. Effectively, we’ve lost our cultural understanding of how to think about it, prepare for it, but most importantly, how to talk about it. The result is that critical conversations aren’t taking place along the way in order to make sure that the care people receive is care they really understand and want. 

What are some of the best conversations or ideas that have come out of End Well’s interdisciplinary approach to end of life care?

From death education for high school students, to creating a lasting digital legacy after you die, to recording the last sound you want to hear before you die…there have been so many great ideas and collaborations, created and discussed at End Well.  

How do you go about prioritizing human-centrism in your work? Is human-centrism an approach that we can apply to every field?

I believe death is not a medical issue, but a human one. In order to move the needle on improving the end of life experience for everyone, we need to use the basic principles of human-centered design thinking to create lasting solutions. We need to bring the technical experts and life experts into dialogue, which is exactly what we do at End Well. We invite healthcare professionals, designers, lawyers, entrepreneurs, funders, artists, educators, journalists, students, venture capitalists, patients, advocates, payers, policy makers and more to the table to address the many facets of end of life. Human-centered design is all about keeping the end user at the center of the conversation and building a deep empathy with the people you’re designing for. I believe the world would be a much better place if all fields were built with this approach!

In what ways does End Well promote people’s agency in their end of life decision-making process?

At End Well, we believe all people should experience the end of life in a way that matches their values and goals. End Well’s goal is to create a cultural shift to normalize conversations about our mortality throughout life. Through End Well’s online platform and media resource, the creation of new collaborations, systems, protocols, products and networks are coming together to support making the end of life more human-centered for all of us.

What overlap is there between end of life practices and sustainability practices, and are there any initiatives to strengthen it?

Absolutely! For example, it turns out modern funeral and burial practices are quite problematic for the environment. From large amounts of formaldehyde-based embalming fluid being used to acres of land for cemeteries full of steel caskets, concrete burial vaults, and wood coffins to particulate emissions from crematoriums. There are many newer alternatives to traditional options and a growing movement around eco-friendly burial to mitigate the environmental impact of death. On May 21, 2019, Washington State’s Governor Jay Inslee signed SB 5001 which legalizes natural organic reduction, or “the contained, accelerated conversion of human remains to soil.” The law will go into effect on May 1, 2020 and was advocated for by End Well partner Recompose, a Seattle-based company founded by Katrina Spade which offers “natural organic reduction,” a process which gently converts human remains into soil.

Are there innovative practices emerging in the field of end of life that we should keep our eyes on right now?

The death doula movement is picking up lots of momentum, which is fantastic! By complementing the care provided to patients by hospitals, senior-care facilities and hospices, death doulas are well suited to support families and fill in the gaps that occur during the dying process.

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