Responding to a population seeking practical knowledge and tools, the death literacy movement is filling a much-needed void by offering clarity, comfort, and confidence.
Having explored the implications of America’s aging demographic in my introductory article, I wanted to follow up with a piece that continues to provide information, clarity, and encouragement in support of personal and cultural transformation. By helping readers understand the evolution of death denial and its effect on our cultural behavior, individuals gain awareness that can positively impact and enhance their lives. For this article, I enlisted the help of my esteemed colleague Sarah Parker Ward, who is well-versed in behaviors that drive and perpetuate cultural resistance.
To understand the cultural transition from a society that found comfort in end-of-life rituals to one that has distanced itself from the natural dying process, it is essential to look back to the Civil War era—a period when America was drowning in unrelenting grief and catastrophic loss of life.
The Second Industrial Revolution became a fresh start for a country torn apart by war. The convergence of innovation, science, and medical advancements spurred the rise of American can-do optimism, economic opportunity, and societal transformation. Rural populations migrated toward industrialized centers, where hospitals welcomed the sick into their modern, sterilized environments. In these rapidly expanding communities, the practice of out-of-home care not only replaced the traveling country doctor but also reduced the cathartic gatherings and intergenerational knowledge-sharing that traditionally accompanied end-of-life rituals.
Within these sanitized spaces, death—an inevitable and universally shared experience—was considered a medical condition, and with that, the roots of contemporary death denial took hold. It was here, in these sterilized environments, where death, an inevitable and universally shared human experience, became a medicalized condition and the underpinnings of death denial developed its roots.
The 1990s witnessed the emergence of the aging zeitgeist, a new generation of interdisciplinary advocates—referred to by scholar Tony Walter as “neomodern revivalists”—who sought to rekindle interpersonal relationships with death rather than institutionalized ones. Like most consciousness-raising movements, socially driven individuals and do-good nonprofits embraced this ethos. Together, these early adopters sought to confront death denial and needless end-of-life suffering through education. Slow-moving at first, attempts to destigmatize the taboo with more forthright conversations on emotional well-being, particularly among younger generations, have shifted in the aftermath of the COVID pandemic. As professor of psychology Lauren Breen pointed out in the Conversation, in 2022, “The pandemic has shown more than ever that we must do more to understand and support grieving people, strengthen their supporters and boost collective well-being in the wake of everyday loss and large-scale disasters.”
After experiencing the randomness of sudden death and stunted funerary rituals at scale, people are globally heeding that call, becoming more open to talking about dying and grief. Faced with aging populations, continued reticence around end-of-life is evolving. As the International End-of-Life Doula Association explains, “In the contemporary Western way of life—family members residing in different places, multiple generations no longer sharing the same home, increasing dependence on technology, and the bias embedded in our health care system—people have lost touch with the naturalness of dying and how best to support people going through it. As a result, too many people die in fear and unnecessary suffering.”
While interest in and engagement with end-of-life conversations has become markedly more mainstream since COVID, the gaps between concept and practice demonstrate how death avoidance continues to be a barrier in most industrialized societies.
Two self-declarative forms have become a reliable measure of how an aging population is coming to terms with life’s inevitable finitude. Recognized by both medical and legal communities, the advance care directive (ACD), also known as an advance care plan (ACP), and the healthcare proxy (HCP) serve as future-forward instructions for medical care. While ACD/ACP ensures that one’s values, beliefs, and goals are known and respected, the HCP, also known as a healthcare power of attorney (POA), identifies a person (the agent) authorized to make medical decisions should the patient become incapacitated. When completed and shared with family and the care team, these essential documents help eliminate the burden of uncertainty regarding one’s future care.
A 2020 study published in the Journal of the American Medical Association reported a 4.9 increase in users completing no-cost ACPs between 2019 and 2020. However, the broader population trend of low ACP completion persists: only 44 percent of elderly U.S. adults have completed forms, and this figure is as low as 5 percent in France’s total adult population, according to a 2024 study published in the Journal of the American Geriatrics Society.
Another consequential indicator identified communication as a key component of death-readiness. According to The Conversation Project, 92 percent of Americans believe it is important to discuss their end-of-life care wishes. Still, only 32 percent have taken steps to ensure these conversations occur.
So why does death denial persist even in light of the universality of the experience and, as explored later, the overwhelming societal costs associated with it?
One valid response can be found in Ernest Becker’s 1973 book The Denial of Death. In it, he attests, “[T]he essence of normality is the refusal of reality,” implying that the average person simply cannot tolerate thoughts of their eventual demise. This premise is also the underlying tenet for the Terror Management Theory, which suggests that individuals subconsciously “manage” the idea of death, often through ideology. In other words, to soften the anxiety of one’s finitude, people structure their behaviors and worldview around the promise of symbolic or literal immortality. While the concept may sound abstract and intellectual, it’s likely something you have experienced firsthand.
The concept of symbolic immortality considers that some essence of a person’s core values will outlast their lifetime. Whether this materializes through involved workplace mentoring, social charity, or family traditions that one’s parents passed down, symbolic immortality ensures that the impact a person made in life is eternalized in their legacy.
On the other hand, literal immortality embraces the belief that the soul continues past one’s corporal death or that death itself can be overcome. Numerous examples of the prior can be found throughout history and across various religions. The ancient Egyptians went to great lengths to prepare bodies for what they anticipated was a very active afterlife. In Christianity, one’s existence is believed to persist in heaven or hell. Interestingly, a 2023 survey by the Pew Research Center found that the belief in heaven extends to 71 percent of the American population, approximately 9 percent more than the reported size of the Christian population. Moreover, the Hindu tradition honors the concept of reincarnation, while Buddhist beliefs suggest a perpetual rebirth guided by karma.
Yet, when religious ideology doesn’t quite meet one’s preferences, the promise of eternity can be found via alternative prognosticators. For example, the scientific revolution of the 21st century and the collective experience of Ray Kurzweil’s “Law of Accelerating Returns”—which posits that technological advancements develop at an exponential, rather than linear, rate—have helped spur beliefs in cryonics, among other bionic promises of limitless lifespans.
Also of the literal immortality ilk is the transhumanist movement, a philosophy built on the premise that the human condition can be enhanced by overcoming biological constraints through the use of technology. Supporters of this techno-futurist human potential include some of Silicon Valley’s most recognizable figures.
Through these numerous manifestations of both symbolic and literal immortality, humans can walk the psychological tightrope of knowing that we’re mortal without becoming paralyzed by the dread of such truth. However, these concepts are not the only way forward, nor are they necessarily the most productive views to adopt.
Between the popular six degrees of separation theory and our digital connectiveness, misfortune is unavoidable. However, being unprepared for death has profound, adverse effects on the living.
Stories of avoidable situations saturate the media. There are numerous examples of how this has devastating impacts on families and loved ones, such as the sudden death of a head of the household who died without a will or financial plan for their family, anguished family members struggling to make life-and-death medical decisions without guidance from an advance directive, and relationships torn apart following years of infighting over a family estate.
Even the rich and famous, who can afford teams of attorneys to draft complex estate plans, have faced similar situations due to a lack of planning. Picasso, Prince, Jimi Hendrix, and Kurt Cobain are just a few celebrities whose unclear or absent estate planning ended in decades-long legal battles.
No doubt, the real-time consequences of death denial often add unnecessary chaos and disruption for both individuals and their kinship networks, chosen or biological. Here are four key areas that shape end-of-life experiences for individuals and their care circles:
Lack of financial readiness
Of the approximately 3 million Americans who die every year, a majority are a result of diseases or conditions typically involving physical decline, cognitive decline, or both, over time. Only a few people die instantaneously from cardiac arrest, work accidents, or the proverbial “getting hit by a bus.” This means most people will require supportive care ranging from a short hospital stay to complex care over several years.
The median monthly cost for home health aide services in the U.S. was between $6,000 and $10,000 in 2024 for a private room in a nursing facility. Without adequate financial planning, individuals can quickly become wholly dependent on social service providers, such as Medicare or Veterans Services, to determine the type of care they can access and for how long. Moreover, funerary and disposition expenses must also be considered, with median costs ranging from $6,000 to $8,300 in 2023, depending on the type of services secured. The average working-class family simply doesn’t have the resources to absorb such extensive out-of-pocket fees.
Poor goals-of-care congruency
The lack of clarity or failure to communicate what kind of care a person would like at the end of their life means that these important decisions need to be made by family or health care professionals, and may not be what the person actually wanted. The default modus operandi for the health care system is to heal, avoiding death through medical intervention. Yet in a global study of personal end-of-life care preferences published in the Journal of Medical Ethics, more than 1,100 physician respondents rarely considered life-sustaining treatments a good option. Clearly, not everyone wants every possible intervention to be used at every stage of life. This is why the effectiveness of advance care planning depends on annual updates to reliably represent one’s quality-of-life objectives.
Increased caregiver burden
While caring for the ill and elderly can be deeply rewarding, family caregiving is not without challenges, particularly in Western cultures. According to 2025 data from AARP and the National Alliance for Caregiving, 59 million Americans are responsible for providing ongoing care to family members who are 18 years of age or older and have complex medical conditions. Notably, nearly 50 percent of caregivers reported financial strain, and one in four caregiver respondents provided more than 40 hours of care per week, despite 60 percent of them also juggling work with their caregiving responsibilities. Unfortunately, the caregiver’s burden, both financial and emotional, does not end with death. In contrast, when the impact of end-of-life is constructively woven into collectivist communities such as those of Asian and Indigenous cultures, established traditions help support the bereaved through their transition.
Maladaptive coping in youth
Death experiences shrouded in emotional distress and/or a lack of clarity perpetuate a fear of death and promote prolonged and complicated grief among the young people impacted by loss. As this instructive post from Death With Dignity points out, “[A]voiding end-of-life conversations with kids, while done with the best of intentions, can lead to confusion, fear, and even distrust in the long run.” Instead, professionals encourage open, age-appropriate conversations to support the development of adaptive coping mechanisms and death literacy at an early age. For example, the Dougy Center Model for youth and adolescents operates on a philosophy that death is a disruptive, but natural part of life and that healthy adaptation to loss is facilitated by both relationships and personal agency.
Whether one consciously or unconsciously ignores life’s finitude, the complete avoidance of death is unproductive. As palliative care expert Dr. Ira Byock shared with the online publication Next Avenue, “You rob life of its richness. The best way is to think about it and prepare for death in a defined way.” Experts believe it’s essential to recognize that thinking about death—often referred to as “death awareness” or “death cognition”—doesn’t just lead to a neutral outcome. Instead, contemplation of one’s mortality has been shown to enhance desirable qualities such as empathy and generosity.
Qualitative studies on near-death experiences, along with the personal growth benefits of mortality salience, emerged in the Western world in the 1970s, with innovative thinkers such as Raymond Moody, author of Life After Life, and University of Virginia School of Medicine professor Bruce Greyson paving the way. However, it’s essential to note that the practice of death contemplation has a long history, dating back to the Buddhist lineage. The Tibetan Book of the Dead, believed to have originated in the eighth century, speaks at length to the possibility of growth through serious consideration of life’s transience. Such principles have been rejuvenated in the public eye by contemporary Buddhist teachers such as the late Thích Nhất Hạnh and Pema Chödrön.
Yet the proposition of a more purposeful existence as a consequence of death awareness should not be relegated to mere spiritual abstraction. Instead, it yields highly practical skills. According to Jennifer A. O’Brien, author of The Hospice Doctor’s Widow and 35-year veteran of the U.S. health care system, “I have come to see that true peace and balance in life come only when we’ve made space to contemplate our own death and the inevitable loss of those we love. This kind of reflection isn’t dark; it’s deep, and it makes us more present, more connected. It’s death literacy: the personal and practical understanding we need to navigate mortality with clarity, courage, and care. And it includes four subtopics: family caregiving, end-of-life preparation, after-loss administration, and grief.” When she lost her husband, the conversation and preparation they had made before his death helped her survive the next steps.
Death literacy should be integrated into the development of comprehensive public health policies. “Death involves an extensive public health system that is often overlooked as merely a result of medical treatments. The development of services that meet the needs of citizens requires a comprehensive understanding of the current situation. Through the lens of public health, death literacy plays an important role in policy and service development,” pointed out a 2023 study published in the Frontiers of Public Health.
Below is a two-step approach for improving mortality awareness and death literacy. Additionally, these suggestions provide constructive insights into relevant documentation, which helps ensure that a person’s wishes are followed by caregivers during their sunset years. Such positive reframing has helped the aging and their circle of family and friends develop a deeper appreciation for life and preparedness for death. Collectively, these approaches will help provide the tools needed to navigate end-of-life experiences with greater clarity and care.
There are many ways to start this transformative journey. For a more free-form approach, one could attend a local Death Cafe or Death Over Dinner event where guests are invited to discuss end-of-life curiosities in a nonjudgmental manner. Alternatively, engaging in legacy-centered activities such as composing your obituary, crafting legacy letters for friends and family, or building a memorial playlist is another important step. For a more structured approach to learning, consider taking a course or workshop. Explore your local library, your state department for the aging, and AARP to see what’s available nearby or online. A quick Google search can help identify a growing list of expert-led resources. Many of these options offer opportunities to learn and connect with others who have similar interests.
However, if you’re more introverted, you might start by simply noticing life and death in the natural world around you, perusing websites like Bevival (run by this article’s co-author Caren Martineau) and The Order of the Good Death, or following the prompts in The Death Deck, a card deck offering more than a 100 multiple-choice and open-ended questions such as “What’s a song that you hope is shared at your funeral?” and “Is it appropriate to take pictures at a funeral?”
Whatever road you choose, the point is that by organically building resources, you not only acquire the comfort that comes with clarity, but you also provide directions for those who will execute your wishes at the time of need.
Advance Through Documentation: Once you’ve developed a familiarity and comfort with the practicalities of end-of-life preparation, put pen to paper. Start by identifying your health care proxy and completing an advance care directive. These forms can be downloaded free from your state’s website and those of nonprofit organizations that advocate for better end-of-life preparedness, such as Compassion and Choices and The Conversation Project. Similarly, you may wish to meet with an estate lawyer who can address your specific needs and/or reduce the volume of tactical to-dos for loved ones during your sunset. Alternatively, you may decide to engage a death doula to help you navigate your end-of-life planning long before the time of need and, separately, to be present for you then.
Here is a brief checklist of documents needed to help ensure your affairs are in order, along with other important information provided by the National Institute of Aging:
Recognizing the universal truth of impermanence helps us accept that the cycle of life is in a continuous state of flux and transformation, and death literacy is an appropriate tool for all ages and stages of life.
While the path toward literacy isn’t necessarily comfortable, it’s certainly worth pursuing, knowing tomorrow is not promised.
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