Dying, Death & Desires: End of Life During the COVID-19 Pandemic
PROJECT LEAD: Natasha Margot Blum
AUTHORS: Natasha Margot Blum and David Janka
PROJECT CONTRIBUTORS: Natasha Margot Blum, David Janka, Sara Cambridge, Leila Roumani, Scott Witthoft, Ben Seligman, Nadia Roumani, Alana Ippolito, Andrew Holder
INTRODUCTION
This article shares the discovery insights and opportunities from our End of Life x COVID-19 project through the Emergency Design Collective with Sara Cambridge, Leila Roumani, Scott Witthoft, Benjamin Seligman, Nadia Roumani, Alana Ippolito, and Andrew Holder. This work is in progress, shared to inspire and inform (we wrote and published within a week). We invite your feedback and collaboration. Written by Natasha Margot Blum and David Janka.
As of April 25th, 52,782 people have died from COVID-19 in the United States. Despite our best care and efforts, future loss of life will be in the tens of thousands. Because of COVID-19, there will soon be many people who are forced to make decisions about the way they want to die, or to make these decisions on behalf of their loved ones. Perhaps just as often, healthcare providers will be forced to make these decisions on behalf of those they care for, frequently with uncertainty about their patients’ wishes. The infectious nature of the virus, coupled with variable hospital resources, brings additional challenges to the way end-of-life wishes are carried out and the ability of loved ones to participate meaningfully in the end-of-life experience. Even when this immediate COVID-19 crisis subsides, many of these issues around end-of-life wishes and dying experiences will remain. How can we cope with the current situation and be better prepared when the next crisis brings similar difficult choices?
This pandemic is challenging us to confront our fear of mortality and forcing us to reckon with all the ways we are not “prepared” to die. While death is an essential part of the human experience and something core to both cultures and healthcare systems, death at this scale, delivered with immediacy and the potential to affect anyone, has created an urgent need for us to acknowledge and engage, as its presence will only amplify in the coming months.
Act I: Context
Act II: Themes & Journey Map
Act III: Opportunities & Resource Guide
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.
COVID+ patients descend swiftly upon the hospital, unaware of the protocol that will transpire, few with paperwork, and many without an emergency contact for the hospital to call. Do they understand that being on a ventilator means they’ll be sedated and unlikely to be able to speak? Do their families understand that “doing everything” to save their person might damage their heart, rendering it unlikely to start again the next time it stops?
On top of this, because patients are highly contagious and must be isolated — in some cases as soon as they enter the hospital walls — there is a great challenge to providing loved ones with access to a critically ill patient. Other people cannot necessarily be physically present to have end-of-life conversations or provide comfort. They may not be able to be with their loved ones as they are dying and they cannot provide the physical experiences they would want for them at the end of life, or even to their bodies immediately after death.
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?
Over the last 3 weeks, a bold group of us — researchers, designers, clinicians, and academics trained in human-centered design — have coalesced to understand what palliative care, hospice, dying and grieving from and during COVID-19 looks like as part of a larger emergency response initiative, the Emergency Design Collective. Our initial goal: how we might design for this uniquely challenging period to support the dying, their families and loved ones, the medical system providing care, and communities in grieving?
Clockwise from top left: Evening Star End-of-Life Doulas, Sheila Poswolsky, RN, Elysa Fenenbock, Dr. Michael Fratkin of Resolution Care, Dr. Christina Pascarzi
We conducted rapid discovery research into the novel coronavirus’ impact on end of life in the U.S., where our core team is based, through expert and stakeholder interviews, secondary research, participatory immersion, and a comparative analysis of existing end-of-life resources. Through interviews ranging from clinical experts to people who have lost family members, we have been fortunate to learn from the experience of the following experts during our immersion, along with our broader team’s experience on the front lines of this topic.
Max Ritzenberg, M.D., Emergency Department, Zuckerberg San Francisco General Hospital, and Veterans Administration, Palo Alto
Kai Romero, M.D., Emergency Department, UCSF, & Chief Medical Officer, Hospice By The Bay
Michael Fratkin, M.D., Resolution Care (@MichaelDFratkin)
Sheila Poswolsky, Retired RN, Palliative Care at Veterans Affairs Boston Healthcare System
Christina Pascarzi, PsyD, Clinical Psychologist specializing in anxiety & OCD (@Christina Pascarzi, PsyD)
Evening Star End-of-Life Doulas: Christine Borchert, Darci Shaver, Deanna Hagy, MaryAnn Giunta, Victoria Quinn-Stephens
Jeremy Whyman, M.D., Palliative Care & Inpatient Geriatrics, Beth Deaconess Israel
Elysa Fenenbock, family member, artist and designer at ReImagine and beyond (@Elysa Fenenbock)
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.
In palliative care, patients have a serious illness but death is not immediate. Time is comparatively abundant — to reflect, cope, reassess, consider treatment options. COVID-19 moves more rapidly than long-term illness, but palliative care and hospice teach us the process — and we must adapt it to this pace.
During a pandemic, people are uniquely attuned to the possibility of death (even if they are not considering themselves directly at risk). Could this be an opportunity for our culture to meaningfully engage with death as a collective experience? Might we approach it from a uniquely American perspective of agency — to shift the stigma around dying as a passive force that happens rather than a choice, to be designed with the same thought we give our lives?
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.
Emotional vs logistical decisions A tension between emotional needs and logistical needs around dying, and the fuzzy intersection is difficult to parse. One thing is very clear: when death comes, and no prior logistics are in place, people lose the opportunity to grieve because they must research and quickly make decisions. Logistical scaffolding enables emotional space to process pain and loss.
Viewing death as failure — rather than normal — clouds judgment Clinically, people are out of touch with their own bodies and their embodied sense of wellbeing, we learned from an interview. The effect of an intervention can be seen and felt in the body, but our culture in the U.S. is conditioned to reject death as failure, rather than natural. We revere extremes, demand the kitchen sink of aggressive attempts to save life, and repress the signals our bodies tell us about their state.
Unknowns abound in the process of death and dying In the case of COVID-19, what happens beyond the threshold of the hospital entrance is foreign, obscuring an already complex journey. Making decisions blindly is difficult, and reasonably so. The nature of this crisis leads people to make end-of-life decisions based on resource availability (i.e. “don’t take me to the hospital if I can’t be with my family”; or “don’t use the vent on me over a younger patient”).
No decision is a decision in itself If no decision has been made, this will default to the family or designated surrogate of a patient. Some families are completely out of alignment, which can be emotionally as tough for the family as it is for healthcare providers, trying their best to support divergent wishes. Will Uncle Larry champion your wishes on your death bed? Or might someone else make a better advocate?
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.
Shared language & meaning People use euphemisms when talking about death and dying — what do they really mean? A lot of the terms relevant to end-of-life options and decisions can be interpreted in different ways. This is also colored by peoples’ experience and exposure to depictions of these situations in the media or entertainment. Communication must be culturally relevant and sensitive, must consider literacy and a person’s native language. Some people are visual learners and need to see what they are considering.
The double-edged sword of technology-enabled communication Since COVID-19 has disrupted our lives, technology has been inherent to the way information is shared, decisions are made and connection is preserved. Even before this crisis, one hiccup in these chains of technology could hamper communication entirely. A pattern emerged as we heard repeatedly about details that can make or break connection during end of life, when time windows can be tight and you might only get one shot.
Do all parties own the appropriate technology or can they get temporary access? In times of stress and rapid decision making, people may be left out if they aren’t on the right platform at the right time. We heard from an interview that a recent opportunity to participate remotely in a funeral service was lost because the information was only sent out over email, at a time when this person was abstaining from screen time. When someone is responsible for facilitating virtual participation during death or a funeral, they must understand, explicitly or implicitly, certain elements of audiography (position of microphone, toggling between mute modes — intentionally) and videography (image framing and orientation, stability, avoiding drift). They must consider power for the device, back up batteries and access to outlets. While many of these details feel mundane, they matter right now.
Unlocking access Paramedics still know to look on the fridge for a DNR (Do Not Resuscitate order). If critical paperwork is elsewhere, no one can use it unless someone knows where it is and can retrieve it. If a will lives in a locked garage of your cousin, it can’t help her or you. Decisions and communications need to be adapted so that they can reach family, or clinicians, or travel with a person who needs treatment and may begin the dying process. Keys, combinations and passwords must be considered.
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.
Legacy precedes paperwork on the journey toward acceptance End-of-life paperwork requires a certain degree of acceptance. It’s no wonder that advanced directives have low completion rates. Medical complexity is high, and emotions are intertwined with logistics. The Evening Star End-of-Life Doulas shared several helpful tools they use with clients to help them evaluate and define their legacy, a critical stage that celebrates their life — and helps them reflect on their values and resolve their regrets.
We lack exemplary models of good — or great — death Many passionate end-of-life stewards found their calling through a traumatic or sub-optimal experience with death. We learned from the Evening Star Doulas that to guide others means to know the experience yourself. Most people have not contemplated what a good dying experience could be, much less how to die. “People don’t know that you don’t have to embalm a body.” From religious to environmental influences, across emotional and logistical elements of dying, options abound (is human composting on your radar?), but few aside from the death-forward are aware of them.
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.
Creating more presence via video Front line workers are using tablets and smartphones to help patients who land in the ICU communicate with their families. COVID+ patients who remain at home rely on the same video technology. Dr. Fratkin sees communication with his patients over video as having unique advantages, using the metaphor of a capacitor to describe the quality of this interaction. The two screens on either end of the connection are like the plates of the capacitor, concentrating the energy between two people without providing a direct channel. This allows for focus and presence during an important conversation, but with inherent boundaries. For him, connection over video facilitates the right balance of intimacy and professionalism.
Authentic participation and space to process creates more connection One can lead a service, write a eulogy, be the point person to run an online meeting or make a playlist or video. Witnessing is also an essential part of participation. It is important to consider how people interpret what is happening during the stages of dying and grieving. Survivors will be profoundly affected by the dying experience; the “witnessing gap” between people can be large, and the take home message radically different for each person. Creating space to process the experience is valuable; intent and memory are equally important players.
Grieving is a process, not a singular moment Conditioned guilt persists around the idea that being absent for the last breath or ceremony means missing a key moment to support the dying. In fact, there are many opportunities — there is no one moment which is more valuable than another to offer presence, or participate in grieving or honoring the dead. In the Jewish tradition, an unveiling takes place anytime between the end of shiva and the Yahrzeit. There is a second chance to gather and remember, which takes the pressure off people to drop everything at considerable cost to be present for a moment. We learned from one stakeholder who was in another hemisphere when her grandmother died, and wrote a eulogy as her form of participation in her family’s ceremony. She appreciated another chance to say goodbye at the unveiling.
Mapping the key moments of someone who progresses to death from COVID-19, their common options, and additional touch points along this pathway illuminated the above insights and the moments that matter.
Where in this journey do you think a person has the greatest degree of agency? Where do you suspect they have higher cognition to enable decision-making?
Before the onset of symptoms. By the time COVID+ patients arrive in the hospital, it is too late to begin thinking about advanced care planning. The cognitive load and flood of CO2 in the brain renders complex decision-making and communication difficult — if not impossible — under stress. Compound this with heavy sedatives administered while intubated and on a ventilator, and communication from patient to health care provider becomes ineffective, if not impossible. The only good time to express wishes about dying is while you are mentally and physically capable — before the virus hits you.
While there are many worthwhile challenges and moments to design for — from the beginning of the dying process through long-term grieving, we learned that the greatest challenge in providing care and comfort to the dying is knowing what they want. Death, like life, is a uniquely individual choice, the Evening Star End-of-Life Doulas shared.
Where do you see opportunities in the journey that can make an impact on death and dying during this pandemic?
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.
There is a clear opportunity to reduce the cognitive load of planning, preparing and acting — both before a crisis occurs and in the midst of a time-sensitive decision point. How might we incorporate end-of-life decision making more explicitly in the ways people prepare for disasters and unexpected situations? How might we help people understand how dying might occur and why advanced preparation is prudent? If one is not prepared, how can we help them focus on the choices they do have so they can make them quickly?
We also noticed a pattern: for some people, their wishes depend upon how limited resources will be deployed. Some see planning their end-of-life desires as an opportunity to decrease the decision burden on healthcare providers in a time of extreme stress.
How might we elevate end-of-life discussions and planning to the status of civic duty or a way to make a personal impact in a time of crisis? Is “having one’s affairs in order” an opportunity to give people a sense of control in a time fraught with uncertainty and feelings of powerlessness?
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.
How might we increase awareness of and access to the useful resources that have already been developed? How might we elevate or modernize tools to see greater utilization? Is there an opportunity to create virtual “adapters” so existing physical tools can find a home in the land of Zoom and other video conferencing platforms? How might we facilitate conversations in a virtual environment so that people can focus on the conversation, rather than the logistics of having it?
We also learned from our research and interviews that for many, a small conversation leads to a bigger one — successful initiation creates momentum and propagation. This is an opportunity to reduce the friction of starting end-of-life conversations, to increase the likelihood for active participation, and by proxy, to stimulate deeper dialogue in the future. Finally, people need options — this is not a one-size-fits-all endeavor. How might we facilitate discovery and provide opportunity to explore and experiment?
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?
Instead of decisions about death and dying seeming to exist in isolation, build a solid foundation for these conversations to sit on. For example, memories surface what and who is important — how might we provide space for and amplify moments of reflection to directly inform decisions about the future? There is an opportunity to help people see a stronger connection between their values in life and their preferences about what efforts they want to preserve their life. In situations where death is often framed as something morbid or a form of submission, we can reframe the conversation to be about preparation, control and clarity.
How might we de-medicalize death and dying? How might we expose people to the breadth of options for care decisions, dying experiences and burial? How might we shift the focus to a celebration of life and legacy?
Finally, the conversations themselves are an opportunity to build connection. What are ways to strengthen relationships in the process of collecting information? Knowing there is likely forced separation when someone dies from COVID-19, can these conversations create moments of connection and togetherness that persist and permeate through walls of isolation? Is there an opportunity to create a reserve of connection that sustains people and provides peace of mind during a dying experience?
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.
How might we facilitate a care team’s efforts to connect with family on the outside? What are other ways to give people the peace of mind that their loved one is not dying alone?
While people may be physically separated, what are the other forms of connection and presence that may be available? What other sensory experiences would be valuable to support in this setting? In times where someone outside of a hospital cannot direct their care and compassion towards a loved one at the end of life, how might we provide meaningful outlets of connection?
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.
Check out our Dying & End-of-Life Resource Guide here, a curated guide to the following types of existing resources:
In-person games or events
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, part of the Emergency Design Collective. Project End of Life is passionate about catalyzing meaningful conversation and connection around dying, death and the grief that we are all experiencing — or will soon.
