Illustration by Andrew Holder

Dying, Death & Desires: End of Life During the COVID-19 Pandemic

Written by Natasha Margot Blum & David Janka

Act I: Context

“I couldn’t tell you how many 90-year olds I’ve given CPR.” In emergency rooms around the country, we hear stories of physicians performing frequent and dramatic resuscitation efforts during the COVID-19 crisis. Without knowing their patients’ wishes through an advanced directive, healthcare providers must default to standard clinical protocol, which requires aggressive interventions like resuscitation — even if these interventions are unlikely to succeed, even if they may cause irreparable harm. Physicians wonder if they are delivering the care their patients really want.

If COVID-19 were to hit you suddenly tomorrow, who would you want to make decisions about your care if you couldn’t speak for yourself? What would you want to see, hold, or hear in your final moments? What could soothe your pain and assuage your fears?

Clockwise from top left: Evening Star End-of-Life Doulas, Sheila Poswolsky, RN, Elysa Fenenbock, Dr. Michael Fratkin of Resolution Care, Dr. Christina Pascarzi
  1. Kai Romero, M.D., Emergency Department, UCSF, & Chief Medical Officer, Hospice By The Bay
  2. Michael Fratkin, M.D., Resolution Care (@MichaelDFratkin)
  3. Sheila Poswolsky, Retired RN, Palliative Care at Veterans Affairs Boston Healthcare System
  4. Christina Pascarzi, PsyD, Clinical Psychologist specializing in anxiety & OCD (@Christina Pascarzi, PsyD)
  5. Evening Star End-of-Life Doulas: Christine Borchert, Darci Shaver, Deanna Hagy, MaryAnn Giunta, Victoria Quinn-Stephens
  6. Jeremy Whyman, M.D., Palliative Care & Inpatient Geriatrics, Beth Deaconess Israel
  7. Elysa Fenenbock, family member, artist and designer at ReImagine and beyond (@Elysa Fenenbock)
  8. Judy Lee Haworth, Design Thinking Coach, Designer and Strategist, with experience re-thinking advanced care planning and advanced directives (in collaboration with Prerna Dudani, Strategic Innovation Consultant)

Act II: Themes & Journey Map

Here is what we learned, and where we landed for now — in our first phase of discovery.

Theme #1: Rapid Unpredictability

Unpredictable, accelerated death is on our doorstep
With the current pandemic we are seeing isolated, scaled and accelerated deaths. The window from healthy to very sick is shorter than in usual end-of-life palliative care planning. For physicians, COVID-19 behaves unpredictably — what should work doesn’t, sudden declines follow hopeful improvements.

Theme #2: Complex Decision-Making

Decisions are a series of micro-moments
There is no one decision — there are many micro-decisions that lead to a future state. There are several decisions to make, some big, some small — and many “little details” can have a huge impact (bring a phone charger, share your passwords, check your email) on the decisions available to a person and their loved ones down the line.

Illustration by Andrew Holder

Theme #3: Adaptive Communication

Where are these decisions recorded? How are they communicated? During COVID-19 progression, a patient’s ability to communicate diminishes. When someone cannot speak, maybe they can write — if the appropriate writing surface and tool are available. If a proxy has been selected to make healthcare decisions, how are their communication abilities factored in? COVID-19 has highlighted these variable needs and revealed points of friction that add stress, obstacles and confusion.

Theme #4: Anticipatory Anxiety & Avoidance of Death and Dying

Anticipatory anxiety precipitates avoidance
Dr. Pascarzi shared that our anticipation of the unknown and undesired is often far worse than the actual experience, and amplifies the desire to procrastinate important decisions. An analogue from her work with OCD patients is exposure therapy, which involves a self assessment of how anxious or scared clients predict they will be, and a self-assessment of how relieved they predict they will be once they overcome their fear of performing a specific behavior. To help overcome anxiety, people need easily achievable “entry points” to develop a sense of agency, and assurance that they are not failing in new territory.

Illustration by Andrew Holder

Theme #5: Authentic Presencing

Remote palliative care and distance grieving are not new
Dr. Michael Fratkin and his team at Resolution Care offer remote palliative care and have long before COVID-19 arrived. It allows them to scale supportive services for the dying and their loved ones, and mitigate burnout for palliative care and hospice providers who would otherwise travel far and wide for visits. Remote video care offers one connection point — seeing and being seen on-screen. Because both parties know there is no other means to signal presence, video can actually engage more than an in-office visit with a doctor, for example, who would otherwise be turned toward their computer, hurriedly charting notes.

Credit: David Janka (master architect), Alana Ippolito, Natasha Margot Blum, Sara Cambridge, Scott Witthoft, Leila Roumani, Ben Seligman

Act III: Opportunities & Resource Guide

Here are the key opportunities we see to design better dying and end-of-life experiences.

Leveraging the Moment: Dying in a Time of Crisis

Although end-of-life conversations and their output — a person’s clear choices regarding their goals and preferences for living and dying — are useful in all care situations, a crisis amplifies the need for these decisions and has the potential to strip people of time to consider their options. The dynamics of the current COVID-19 crisis provide a unique opportunity to design experiences and tools that meet the moment — one of urgency and unpredictability.

Illustration by Andrew Holder

Breaking Barriers to Entry: The Medium is the Magic

While technically all the information is available for people to understand their options and make informed choices about their end-of-life wishes, most people fail to access this information or act on it. Verbose, jargon-filled forms with a feeling of legal paperwork hinder participation. Even though there have been lists, guides, handbooks, games, and programs to facilitate these conversations and decisions, many people still do not engage with them. Furthermore, with ever evolving technology, devices and platforms — and the expectations around access and usability that follow — we are recognizing the opportunity for more tools and experiences that feel convenient and designed for now.

Illustration by Andrew Holder

Reframing the Conversation: Celebrate Life to Prepare for Death

A clear need exists to normalize conversations around end of life desires so they don’t feel as uncomfortable and burdensome — guidance, structure and intentionally designed experiences to support these conversations are crucial. Decisions around how someone wants to live and die often sit under layers of complex relationship dynamics, cultural influences and perceptions of death. While logistical details present obstacles for many, more often it is these emotional hurdles that delay or derail appropriate consideration. How might we make these conversations more about discovery and exploration, instead of just decision making and filling out paperwork? How do we shift the focus from the destination to the journey?

Connecting When Apart: Remote Participation in Dying & Grieving

From tablets to phones, video conferencing to smart speakers, we have seen many examples of healthcare providers and loved ones hacking together a diverse set of communication tools to cope with the forced physical isolation inherent to dying of COVID-19. While these interventions have allowed for some to feel connected and to ensure their loved one does not die alone, they are available inconsistently and can feel like an act of heroism or desperate MacGyver-ing rather than well-designed options. These “duct tape” solutions are a strong signal that we don’t have the tools, processes and systems to properly support a remote dying experience.

We are working in the U.S., where we’ve focused our initial discovery research and where we are now prototyping concepts. How is COVID-19 impacting dying & death for you, if you’re reading from elsewhere? Do you see other key moments and opportunities for design to create better outcomes and futures? Tell us in the comments. This is an iterative, collaborative process and we welcome feedback and additions to our work.

Dying & End-of-Life Guide of Existing Resources

Since the topic of end-of-life preferences is broad, deeply personal, and socially charged, few have experience talking about it. For the person who is ready to start the conversation, guidance to help them facilitate a successful, open conversation with loved ones is often appreciated. Sara Cambridge analyzed and curated this collection of resources to support people thinking about end of life. Tap into a wealth of guidance and games from leading experts and evidence-based research.

  • Conversation starters
  • Legal advanced planning
  • Logistics advanced planning
  • COVID-specific resources

About Us

We are a group of clinicians, designers, academics, researchers and artists working on urgent emergency response efforts to the COVID-19 health pandemic through our shared process of human-centered design, a collaboration led by Blumline, and sparked through the Slack community, the Emergency Design Collective. We are passionate about catalyzing meaningful conversation and connection around dying, death and the grief that we are all experiencing — or will soon.

Principal Director, Research & Strategy at Blumline. Ethnographer, strategist, liminal thinker, radical listener. Designer of smarter, kinder, wiser futures.

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