Terror Management Theory

— How Humans Cope With the Awareness of Their Own Death

By Cynthia Vinney, PhD

Terror Management Theory (TMT) suggests that human beings are uniquely capable of recognizing their own deaths and therefore they must manage the existential anxiety and fear that comes with knowing their time on Earth is limited.

The theory was developed by psychological researchers Jeff Greenberg, Sheldon Solomon, and Tom Pyszczynski, who published the first TMT article in 1986.1 They based TMT on the writings of Ernest Becker, who spoke of the need to protect against the universality of the terror of death.

In this article, we’ll review key concepts of TMT, look at empirical evidence in support of TMT, explore real-life examples of TMT, and discuss how it is used across different fields.

Key Concepts and Principles of Terror Management Theory

Terror Management Theory explains that people protect themselves against mortality salience, or awareness of one’s own death, based on whether their fears are conscious or unconscious.

If they’re conscious, people combat them through proximal defenses by eliminating the threat from their conscious awareness. If they’re unconscious, distal defenses, such as a sense of meaning, like cultural worldviews, or value, like self-esteem, diminish unconscious concerns about death.2

Cultural worldviews and self-esteem are key concepts of TMT. They are both central to protection against mortality salience. David Tzall, PsyD, a licensed psychologist in New York, notes, “TMT suggests that individuals gravitate towards and defend their cultural worldviews more strongly when confronted with thoughts of mortality.”

Through cultural worldviews, people can achieve literal or symbolic immortality. Literal immortality, the idea that we will continue to exist after our death, is usually the domain of religious cultural worldviews. Symbolic immortality is the idea that something greater than oneself continues to exist after their death, such as families, monuments, books, paintings, or anything else that continues to exist after they’re gone.

TMT suggests that individuals gravitate towards and defend their cultural worldviews more strongly when confronted with thoughts of mortality.

Self-esteem plays a significant role in TMT too. “When faced with the awareness of death,” Tzall says, “people often engage in activities or behaviors that boost their self-esteem as a way to manage the anxiety associated with mortality.” In so doing, they provide the sense that they are a valuable participant  in a meaningful universe.3

These have led to two important hypotheses in TMT. First, the mortality salience hypothesis says we have negative reactions to individuals from a different group, called “outgroupers,” who present a threat to our group, and have positive reactions to those who represent our cultural values, referred to as “ingroupers.” Second, the anxiety-buffer hypothesis says strengthening our anxiety-buffer by, for example, boosting self-esteem, should reduce the individual’s anxiety about death.4

Review of Empirical Evidence Supporting Terror Management Theory

There are over 500 studies conducted in countries around the world supporting TMT. For example, one study found that raising self-esteem reduces anxiety in response to images of death.5 Similarly, increasing self-esteem reduces the effects of mortality salience on the defense of one’s worldview. When the researchers provided positive personality feedback instead of neutral feedback, their preference for a US-based author was equivalent to that of the control group, whereas participants who received neutral feedback far exceeded the control group in preference for the author.6

Another study found that worldview threats increase accessibility of death thoughts. When Canadians were exposed to a website that either derogated Canadian values or Australian values, they had far more thoughts about death when they encountered the anti-Canadian information.7

Real-Life Examples Illustrating the Application of Terror Management Theory

There are many ways that terror management theory can be applied to real life. Tzall provides some examples, such as “religion where religious beliefs and practices offer explanations for life’s meaning, purpose, and what happens after death. People will turn to religion to alleviate existential anxiety and find solace in the idea of an afterlife.”

Believing in religion may provide a chance at literal immortality, but beyond that, it can provide a cultural worldview that brings meaning and purpose to life and can alleviate mortality salience.

Likewise, Tzall gives the example of belonging to a nation that “provides a sense of identity and belonging, which can help individuals feel connected to something enduring. People may strive to achieve success, create meaningful relationships, or contribute to society in ways that leave a lasting impact.” There are all sorts of ways that people can find meaning and achieve symbolic immortality, including being part of a nation that will go on after their death.

In addition to feeling like a part of the nation, people will want to put their own stamp on the nation whether through success in industry, meaningful relationships that have a lasting impact, or other options like volunteering, having a family, or writing a book.

Implications of Terror Management Theory across Different Fields

Different fields can use TMT in different ways. For example, the most obvious may be the field of therapy and counseling. As Tzall explains, “TMT sheds light on how individuals’ psychological well-being, self-esteem, and behavior are influenced by thoughts of mortality.” Tzall continues, this “can help therapists understand existential anxiety and develop strategies to address it.”

The theory can similarly be used in marketing and advertising, but the emphasis is different. “TMT can inform advertising strategies that tap into consumers’ desires for symbolic immortality,” Tzall says. In this conception, marketers and advertisers advertise goods or services in a way that communicates their desire for symbolic immortality can be met.

Similarly, political science “can help explain the polarization of political ideologies,” explains Tzall, “and the ways in which leaders appeal to their followers’ existential concerns to gain support.” Through cultural worldviews that appreciate others like them but reject others that are not like them, leaders can exploit their followers and even lead them to rise up against others that do not agree with them, in wars, conflicts, or events like January 6th, where a small group of like-minded citizens stormed Congress.

Significance of Terror Management Theory in Understanding Human Behavior and Beliefs

Though some studies about TMT have failed to be replicated, Terror Management Theory has continued to resonate with many people. And researchers still use it to describe various events.

For example, a group of researchers used TMT to detail the COVID-19 pandemic during its height, explaining that regardless of how deadly the virus is, the risk of dying was highly salient.8 As a result, in response to the pandemic, people responded to the constant fear of death in both proximal and distal ways.

In proximal ways: drinking and eating in excess to arguing that the virus isn’t nearly as lethal as health experts claim. And in distal ways: affirming an individual’s cultural worldview to maximizing one’s self-esteem, in line with the TMT literature. As threats that remind us of our own deaths continue and expand, TMT will continue to be a leading source of understanding human behavior and beliefs.

Complete Article HERE!

Deadass Podcast’s host Bryan Perry on mission with Nicholas Smithson to talk about death openly

Deadass Podcast host Bryan Perry (left) talks with Nicholas Smithson openly about death.

By Jasmine Hines

When Nicholas ‘Nicko’ Smithson was diagnosed with stage 4 cancer, he would lie awake at night terrified of dying.

The tradesman spent years labouring in the sun and was diagnosed with melanoma when he was 38 years old.

He was given just six months to live.

“I was quite petrified of whether there was life after death,” Mr Smithson said.

“They didn’t catch it (the cancer) in time … it spread throughout my entire body, my bones, my liver, everything like that.”

Mr Smithson, who lives in Rockhampton in central Queensland, underwent intense immunotherapy and two years later is in remission.

A man with brown hair, a mustache and arm tattoos lies in a hospital bed
Nicholas Smithson at a hospital in Brisbane.

He has teamed up with his best friend, Bryan Perry, who owns a crematorium business to help demystify and start the conversation about death through their Deadass Podcast.

In denial about death

Leading palliative care researcher Adjunct Professor Elizabeth Lobb said Australians live in a “death-denying society”.

A close up headshot of a woman with short brown hair smiling
Elizabeth Lobb says it is important for people to talk about their feelings after a diagnosis.

She has spent 28 years of her life dedicated to the psychological impact of oncology, palliative care and grief.

She said people avoid the topic because it is confronting and people fear the unknown.

“It’s not something that we talk about, [but] certainly when someone receives a diagnosis of cancer, it’s one of the first things that comes into their mind,” Dr Lobb said.

She said when you did not know how to respond or help those with life-limiting diagnoses, the first step was to give people a chance to talk about their feelings.

“I often say to family members that sometimes words aren’t needed, it’s just important to listen, we can’t solve this,” Dr Lobb said.

“People who are facing a life-limiting illness can become very isolated and it can be lonely because no one wants to talk about it.”

Sharing eulogies

Mr Smithson, now 40, works for the podcast creating digital content and has been featured in episodes to share his life story, or “eulogy”.

He has been warned by health professionals that his cancer could return, and he has decided he will not seek further treatment because of the harsh impact on his body.

a man with brown hair, a mustache and blue eyes is in front of a microphone
Mr Smithson has shared his story with the podcast.

Mr Smithson said the double doses of immunotherapy led to ulcerative colitis, and his colon had to be removed.

He said working on the podcast has helped him come to terms with death.

“It’s kind of shed a bit of light and helped ease the anxiety a little bit of, if it does end up happening, I’d be OK with that,” he said.

Mr Perry, who hosts the show, said he wanted a platform to share his mate’s story, as well as other people’s eulogies before it was too late.

“We were contemplating his own mortality and discussing some of the things we’ve done together over the years and taking the opportunity to record those memories,” Mr Perry said.

“The intentions were to either keep those or to share them and even potentially have his own funeral.”

A man with facial hair and tattoos smiling bending down and posing with his medium sized white dog
Mr Perry spends so much time with death, he even named his dog Rigor Mortis.

Preparing for death

Mr Perry, who has worked in the funeral industry for more than 20 years, said people were hesitant to think about death.

He urged more people to think about it practically.

“Jot down what you want, put down what sort of songs you want, where you want to have it,” he said.

“It’s just peace of mind for the people that you’re leaving behind so that when your time does come, the family knows exactly what you want and it just lessens the burden for them.”

A man with facial hair and tattoos looks at a casket. There are stacks of caskets in the background
Mr Perry says he wants to capture more people’s eulogies while they’re still living.

Dr Lobb said not everyone was able to communicate their final wishes but she recommended those who could to consider their financial affairs and where they want palliative care to take place, whether it be at home or in a hospital.

“There’s no right or wrong and it’s very individual,” she said.

“Yes, it is devastating, it’s overwhelming, but not necessarily as fearful as [it’s] perhaps being portrayed.”

Complete Article HERE!

Psychedelics gave terminal patients relief from their intense anxiety

— End-of-life cancer patients in a therapy group in Canada used psilocybin to reduce their fears. It helped some find peace.

Valorie Masuda, left, Gail Peekeekoot, center, and Barb Fehlau participate in a grounding ceremony for staff members at Roots to Thrive, a wellness center in Nanaimo, British Columbia, in August.

By Meryl Davids Landau

When Brian Meyer received a Stage 4 prostate cancer diagnosis three years ago at age 62, he was determined to make the most of his remaining years. He immediately retired from a decades-long career in the grocery business and took every opportunity to hike, camp and — his all-time favorite — fish for salmon. Brian and his wife, Cheryl, regularly visited their two grown children and three grandsons and spent time with their many friends.

But it was sometimes hard to keep his mind off his pain and the reality that life was nearing an end. “It tugs at the heart all the time,” Meyer, from Vancouver Island, British Columbia, said in August. A calm person by nature, he found his anxiety skyrocketing.

By November, though, despite a new, highly aggressive liver cancer that shrank his prognosis to months or weeks, Meyer felt calm much of the time. The prime reason: a 25-milligram dose of the psychedelic drug psilocybin he had taken several months earlier, due to a Canadian program being watched elsewhere for the emotional benefits it may offer people nearing death.

In mid-August, Meyer and nine other people with terminal cancers had gathered in two rooms, and there, lying on plush floor mats with blankets covering their bodies, their eyes covered by sleeping masks and music piped in over headphones, they swallowed the psilocybin capsules. The consciousness-altering drug, administered by the nonprofit Vancouver Island wellness center Roots to Thrive, set Meyer and the others on a six-hour journey of fantastical images and thoughts. The hope was that this “trip” would lead to lasting improvements in mood and lessen their angst around death. It was accompanied by weeks of Zoom group therapy sessions before and after, along with an in-person gathering the evening before for a medical clearance and the opportunity for participants and their spouses to meet in person.

Canadian health-care providers have been able to offer this otherwise illegal drug since 2022 when the country’s national health-care system began a special access program for certain patients with serious or life-threatening diseases. To date, 168 Canadians have been authorized to receive the drug under the program. Similar access is not available in the United States, because a terminal patient’s right to try experimental therapies excludes psychedelics, which are banned by the Controlled Substances Act. Oregon and Colorado are in the early stages of allowing psilocybin-assisted psychotherapy due to ballot initiatives passed in the states, but people who receive the drug there could be charged with a crime under the federal law.

Clinical trials assessing psychedelics for various mental health concerns tend to administer them to patients individually. But Roots to Thrive prefers to do it in groups. “The group process in psychedelic-assisted therapy allows for a shared experience that helps people realize they are not alone in experiencing difficult emotions, symptoms or challenging life circumstances,” said Pam Kryskow, the center’s medical director.

By the time Meyer swallowed the psilocybin capsule, he felt comfortable with his cohort. Some, like Christine “Cat” Parlee, 53, who has Stage 4 melanoma that has spread to her lungs and throat, had become friends. At a restaurant where Parlee, her husband, Cory, and Cheryl gathered before the in-person meeting, Brian and Cat shared their hope that the drug experience would be joyful and that it would subsequently enhance their peace of mind.

The day after taking the psychedelic, however, sprawled on a couch in the resort room Brian and Cheryl had rented for the week, Meyer couldn’t conceal his disappointment. Although he didn’t have a negative trip, two of the other participants were overwhelmed by the drug’s intense effects and spent the hours yelling for it to stop. This repeatedly pulled Meyer away from the intriguing images filling his mind, including sword-fighting in a medieval castle yard and cooking elaborate meals of lobster and lamb in a massive industrial kitchen.

His mental journey was also interrupted by having to urinate regularly, a symptom of his prostate cancer, although he was struck by the intense spiritual connection he felt with one of the facilitators, registered nurse Gail Peekeekoot, as she touched his hands to guide him to the restroom. “It was like she was me, I was her. We were one together,” he marveled.

Psychedelic journeys don’t always proceed as people anticipate, leaving some feeling dissatisfied immediately after, said Barb Fehlau, a palliative care practitioner on Vancouver Island and the medical facilitator in the room, who herself has pancreatic cancer. Regardless of the experience while the drug is active, though, psychological healing often follows, she said.

That was the case for Meyer. In addition to his enhanced calmness, he remarked in November that taking the drug seemed to have deepened the connection he felt toward the friends and family who had streamed into his and Cheryl’s home following his worsened prognosis. “I have a way more sensitive outlook. I feel more love toward people,” Brian relayed at the time. Three weeks later, in a hospital surrounded by more than a dozen family members, Brian died. “He remained calm, peaceful and joyful” to the end, Cheryl said.

Should psychedelics ever be legalized as medicine — the first, methylenedioxy-methamphetamine, or MDMA, to treat post-traumatic stress disorder was submitted to the U.S. Food and Drug Administration in December by the MAPS Public Benefit Corporation (now called Lykos Therapeutics) — people who might benefit most are those who have a terminal diagnosis, said Anthony Bossis, a clinical assistant professor of psychiatry at New York University.

Psychedelics do not alter the course of the person’s disease, but they can help make the remaining time more meaningful, Bossis said. He is co-author of a 2016 study of 29 cancer patients that found that a single dose of psilocybin significantly reduced depression and anxiety and “led to decreases in cancer-related demoralization and hopelessness, improved spiritual wellbeing, and increased quality of life,” the study reported.

Feeling a sense of connection to something larger than themselves, akin to what Meyer experienced with Peekeekoot, may be especially important, the study found. “After this experience, people often say, ‘I realized I’m not just my cancer. I’m not just this body. I’m something more enduring.’ This is a real gift,” Bossis said.

How psychedelics might change a person’s outlook is under investigation. One study with mice this past summer by Johns Hopkins University researchers found that the drugs reopen “critical learning periods” in the brain for months after their use. Mice studies don’t translate exactly to humans, but this finding suggests that psychedelics may cause people to be especially receptive to new ideas and ways of being.

Still, the research on psilocybin for those at the end of their lives is in the early stage, and whether the drug might prove harmful for some isn’t yet known. Roots to Thrive’s unpublished research surveying 20 people from its prior three psilocybin group sessions found many felt more positive, peaceful, lighter and less stressed. But four felt little to no change.

Cat Parlee, who participated with Meyer in the August session, had taken psilocybin two prior times at Roots to Thrive in the previous 18 months. While some people experience lasting transformation after taking the drug once, Parlee found that after six months her fears and anxiety would return.

Reclining on a comfortable hammock chair on their home’s back patio the day after Parlee’s August session, her husband, Cory, says the two have come to view the psyche as if it were a cookie with pieces bitten off around the edges. “The psychedelics help Cat find the missing pieces that make her more whole,” Cory reflected. “Psychedelics help you answer questions you may not know or give yourself permission to ask.”

Cat Parlee agreed. “Every time I’ve walked out of psychedelic medicine session, I feel like I’ve left weight behind — weight I’ve consciously decided I’m not going to carry anymore,” she said. This included the negative emotions she had felt toward her deceased mother and the people who badgered her to try the cancer “cures” they read about online. “A lot of energy was wasted on a lot of anger, a lot of sadness and a lot of guilt. I realized I don’t have time to waste on that anymore,” she said.

While many people might benefit from addressing psychological issues that impede their lives, the urge to confront such demons often intensifies when a person is given a few months or years to live, according to Shannon Dames, the founder of Roots to Thrive. Most of us operate under the illusion that we have time to change these things, Dames said. “When you’re at a place when you don’t have that perception of time, there’s a calling that’s really potent.”

About a month before his death, Meyer credited the psychedelic with reducing the discomfort he felt about dying. “I don’t want to say I’m excited, but I am very curious now,” he said. He realized the mushrooms had taken him to an unknown, altered world; death would do the same.

In Parlee’s case, her fear “was that there is nothing — just emptiness — after you’re dead.” During her second psilocybin trip, she watched herself swim in brightly lit, vivid waters amid an intense feeling of love. She was soothed by the sense that experience may be similar to the afterlife.

Since her August session, Parlee has also increasingly found pleasure in standing up for her needs, rather than always worrying about other people as she had previously done. “There’s one thing I want to do before I leave this world: It’s to know that I spent my last few years happy. One thing I can say right now is I don’t have any real regrets,” she said.

Then she took a deep breath and smiled. “I don’t know if I would have ever gotten to that place without this psilocybin journey.”

Complete Article HERE!

Overcoming Death Anxiety

Although death is an inevitable part of life, most people don’t like talking or thinking about it. But for some, the dread and fear surrounding death is so intense that it interferes with their ability to live a healthy life. Here are ways to cope with your fear of death, and move beyond death anxiety to death acceptance.

What is Death Anxiety

Death anxiety, or thanatophobia, is characterized by a fear of one’s own death or a fear of the dying process. Death anxiety can manifest in a variety of ways. While older adults may be confronted by overwhelming thoughts about their own mortality, people of all ages can experience death anxiety. Some may have an excessive fear of losing their loved ones. Some may obsess over the ways they might contract a terminal illness. Others may frequently visit their doctors and request medical tests or body scans, out of fear that they have a chronic disease. Still others may worry about leaving loved ones behind after they die.

Feeling uneasy about the end of life is completely natural. Fear of the unknown and what happens after death is a legitimate concern. But when negative thoughts about death and dying prevent you from living your normal life, it may be necessary to address your anxiety towards death.

How to Cope

The first step to cope with the fear of death is to recognize that fearing death is often a normal part of the human experience. When we accept that death is natural and inevitable, we can come to terms with it and find peace. The Buddhist monk Thich Nhat Hanh’s book No Death, No Fear: Comforting Wisdom for Life is a practical place to start for those looking to overcome their death anxiety. He uses guided meditations and personal stories to help readers live a life free of fear.

People experiencing death anxiety will often avoid talking about it, which in turn negatively affects their mental health. But talking about our fears with our loved ones can be a powerful and healing strategy to overcome the fear of death. If you’re not sure how to break the ice, The Conversation Project offers free toolkits for starting conversations about death and dying. Attending a Death Cafe is another great way to discuss death in an open and supportive environment.

Another helpful way to feel more comfortable with death is to practice rituals. Whether you are religious or not, rituals can help create a sense of meaning and comfort to prepare for your own death as well as the death of your loved ones. You may choose to contemplate the loved ones you have lost and light a candle for them, or practice a death meditation to ease your mind about the inevitability of death. Diving into your family’s religious traditions and exploring new spiritual ideas can also help you move away from death anxiety toward death acceptance.

Finally, focusing on living in the present moment and enjoying every day that you are alive can serve as a powerful tool to curb death anxiety. One of the best pieces of advice from others who have conquered their death anxiety is to focus on living authentically, passionately, and well.

Complete Article HERE!

Solving for X at the End of Life

— In interviews with people who were dying, we learned they wanted to mark their final days with meaningful experiences and leave their affairs in order. It’s time to reset logistics, last days and legacy.

By Thomas Kamber

He died fuller of faith than of fears,
Fuller of resolution than of pains,
Fuller of honour than of days.
Inscription, Westminster Abbey, 1631

Why do we so often die badly? How does it happen that so many of us arrive at the end of life unprepared for the journey? Somehow, we are stumped when it comes to creating a better model of dying. Our unique qualities as individuals are lost in the processes of medical institutions and funeral homes. For those facing our last days, we have a pretty good sense of what’s involved.

A person using a video robot to view various artwork at a museum. Next Avenue
This woman was able to participate in a robot tour of the Whitney Museum by driving a telepresence robot around the museum from her hospice bed in Connecticut.

Twenty years ago, I started a nonprofit organization called Older Adults Technology Services (OATS) based in New York City that helps senior citizens build new models of aging while learning technology skills. We use design thinking methods to create new programs for social impact, using approaches like co-creation, prototyping and customer satisfaction metrics.

We met with people in their hospice beds, in their homes, and on one adventurous occasion, in the Fabergé room at the Metropolitan Museum.

Recently we turned our innovation lens toward what was happening with older people in end-of-life situations to see if we could design new programs to help them. Using a design thinking methodology, we met with people who were dying and asked questions like, “What is a good day like for you?” and “If you could change one thing about your end-of-life process, what would it be?”

We met with people in their hospice beds, in their homes, and on one adventurous occasion, in the Fabergé room at the Metropolitan Museum. Some had been told they had months left, while others were living with just a few weeks in their prognosis. We visited other hospices around the country and spoke with social workers, chaplains, elder law attorneys and service providers.  We read books on death and dying by Caitlin Doughty, Atul Gawande and Richard Rohr. We had weekly review sessions and talked to experts on business planning and branding and customer experience design.

We Are Failing at Dying

Here is what we learned.

We are failing at dying. Instead of a time for growth, deep connection, reflection and deliverance, our ends of life are consumed by petty distractions and institutional imperatives. The dying people we interviewed had not given up on life; rather they were full of desire to mark their final days with meaningful experiences and leave their affairs in order.

Yet almost everyone expressed sadness and frustration that they lacked a path for the right kind of death, the kind of passing that would reflect well the kind of life they had lived and the essence of the person they had become.

People described an entrenched group of institutions, resistant to change and wielding enormous power, which have grown to dominate the last stage of life — hospitals, funeral homes, home care agencies, religious organizations. When asked what they wanted instead people asked for three kinds of help: logistics, last days and legacy.

We were expecting ruminations on the duration of the soul, and instead people were preoccupied with getting the sheets clean and arranging pet care.

The Burden of Unmet Tasks

“Do you know someone who can come clean out my attic?” asked one woman in her fifties, fighting cancer and concerned that her overworked and grieving husband was sinking under the weight of daily tasks such as lawn mowing and housework. It was a startling response, in a bedside interview, to the question, “what’s most important to you now?” We were expecting ruminations on the duration of the soul, and instead people were preoccupied with getting the sheets clean and arranging pet care.

Logistics, it turns out, are top of mind for people who are dying. One woman spoke of her satisfaction in having arranged her funeral details and even set aside a dress to wear in her coffin. In an echo of Maslow’s famous hierarchy of human needs, the quotidian tasks form the base of the pyramid, and it seems difficult for people to elevate their thinking while still burdened with a laundry list of unmet tasks.

Many people commented on the need for legal help with logistics; writing wills, advance directives, health care proxies and financial plans. For many people, procrastination on legal matters resulted in family conflicts, loss of control over health decisions and anxiety about financial losses.

Unfortunately, once people were already in hospice, it was sometimes too late to interview lawyers and schedule notaries for important documents. Critical decisions about health, finances and death planning were left to caretakers and service providers, leaving the dying individual with little control over final decisions.

Death Needs a Reset

Being able to choose the location, activities and company of one’s last days was a recurrent theme. Despite being just days from passing, people expressed interest in writing articles, visiting museums, doing last trips with family members and exploring culture. My organization was able to arrange a robot tour of the Whitney Museum for one woman, who drove a telepresence robot around the museum from her hospice bed in Connecticut. At the end of the day, she drove the robot to the window and silently watched the sun setting over the river. 

One clear message emerged from the interviews: death needs a reset. The handoff from doctor to hospice nurse to priest to funeral director is no longer the only path.

Finally, hospice patients were predictably focused on their legacies. We spoke for hours with people about their thoughts on post-death rituals, the value of a personalized funeral and the services that might help them express their individuality after passing. There was a great deal of openness to modern, innovative funeral approaches— “living funerals,” celebratory parties after death and eco-friendly caskets and cremations.

One clear message emerged from the interviews: death needs a reset. The handoff from doctor to hospice nurse to priest to funeral director is no longer the only path. What’s at stake is no less than our self-determination as free individuals. Like any life transition, death is a chance to explore and express ourselves in our mature stage, when we have perhaps the most important things to say. Modern culture offers endless chances for tailoring this most personal of events to our unique needs, but our social discomfort talking about death blocks us from acting.

Time for Innovative Thinking

We need a new approach to this experience, with higher expectations and more focus on dying well, not just expiring.

We found some truly innovative models in our research: “death cafes” where people gathered to explore themes of mortality and end-of-life planning; alternative hospices such as the Zen Hospice in California and Regional Hospice in Connecticut; digital death planning apps and sites such as Everplans and Everest Funerals; community learning programs run by the Plaza Jewish Community Chapel; and a national dialogue and events series sponsored by the San Francisco-based nonprofit Reimagine. Unfortunately, these programs only serve a small percentage of those who want them.

Here is a vision for reshaping end-of-life services and systems in accordance with what people asked for in the interviews.

Logistics: We need insurance and financial products that recognize the need for intensive health and personal assistance during the end-of-life period and provide enhanced benefits for people who need them. Government might create tax-free plans for legal fees associated with end-of-life plans, and the service sector should increase programs to ensure that people over the age of 60 have a legal will, advance directive and other necessary basic documents.

Last days: Incubate and accelerate a new service sector focused on proper preparation and programming for end-of-life. As major life transitions go, dying is on a par with getting married or having children, so let’s build an industry of death services to rival wedding planners and baby showers. Bring on the social entrepreneurs!

Legacy: Encourage innovation at end of life. We spoke to several innovators who had to pursue legislative recourse to overturn outdated regulations that restricted new approaches in hospice and funeral care. New York City has over 10,000 nonprofit organizations but only one nonprofit funeral home. We need to open the sector to more innovation and reduce regulatory barriers to innovation.

Fear of death and decline holds a strong sway over our minds as we age, and it’s no wonder that we are reluctant to face it. But the longevity revolution means we are living longer and expecting more from each day of our lives, and technology is adding powerful tools for managing our last days and legacies. We need a new approach to this experience, with higher expectations and more focus on dying well, not just expiring.

Complete Article HERE!

Message From A Death Doula

— Everyone Needs A Death Plan (Not Just A Will)

By Hannah Frye

Death is a taboo subject in American culture. So much so that, by the time someone close to you passes, you may not have any idea how they want their affairs handled.

But according to death doula Alua Arthur, getting an “end-of-life plan” in place can make death easier to think and talk about at any age. And this plan goes far deeper than the financial and logistical items covered in a will.

Here’s how Arthur recommends making your end-of-life plan and the benefits it can bring for a well-lived life.

What is an end-of-life plan?

Arthur thinks everybody should have an-end-of-life plan. While the exact contents will be unique to each person, here are some items she recommends including:

  • Your end-of-life care: When you’re nearing the end, what kind of environment do you want to be in? Where would you like to be? What type of food do you want to eat? How do you want to feel? This will help your loved ones make the best decisions for you if you’re physically unable to. 
  • Your body & funeral service: What do you want done with your remains? Do you want a funeral? What does it look like? Any places you’d prefer not to have it? If you don’t know your options, consider looking into it. There are so many innovative and beautiful ways to handle remains you probably haven’t heard of yet. 
  • Your possessions & financial affairs: This tends to be covered in a will, but can be included in your end-of-life plan as well. 
  • Your pets & non-relative dependents: Are there any living beings you take care of that you want to pass on information about but may not be included in your will? If so, add a plan for them in this document. Consider pets here if you have any.

Now, it’s important to remember that these end-of-life plans are meant to change and evolve with you. 

If you learn about a new burial service that interests you, add it to the document. If you went to a funeral and saw something you wouldn’t want for yourself, put it in your document. This way, when you do eventually pass, your loved ones will know it’s up-to-date with your honest wishes.

Why are end-of-life plans important?

For those who prefer to shy away from discussions about death, don’t worry—you’re not alone. But here are a few reasons that making an end-of-life plan and talking more openly about death can actually help us live healthier lives:

1. Too often, we see death as “a failure”

Shoshana Ungerleider, M.D. has a unique perspective on death as an internal medicine physician and the founder of End Well–a nonprofit on a mission to change how the world thinks about the end of life.

Ungerleider says some of the strong distaste toward the topic stems from how Western medicine views death in a hospital setting. “It’s partly because we as doctors see death very, very often as a failure. And we try to do everything we can to avoid failure in medicine,” she explains.

But in the end, she notes, “Death keeps us awake to our lives.” By pushing thoughts of death away, we can actually increase the power they have over us. Making an end-of-life plan is a way to accept death for what it is and take away some of the stigma that surrounds it.

2. Speaking about it can help with death-related anxiety

On an individual level, death can be scary and anxiety-inducing to think about. The unfortunate truth is that we don’t control how we pass or when. But, what you can control (at least a little bit) is how your death is handled, hence the freeing effect of the end-of-life plan.

Knowing this part of the equation is sorted can actually bring an element of known to the unknown, potentially easing death-related anxiety.

3. A plan can help support your loved ones when the time comes

Having these big questions answered ahead of your death is a service to your loved ones who will care for you in your final days. By taking some of the work off your loved ones’s plate through pre-planning, you’ll help them grieve your passing with just a bit less stress related to logistics. Think of it as paying it forward to those who will care for you during this time.

Though it may not be accessible for everyone, working with a death doula could also prove helpful for you and your loved ones (and you can even request that in your end-of-life plan).

4. Acknowledging death can make you more present

Your considerations around death don’t need to stop once you wrap up your end-of-year plan. Instead, Arthur strongly recommends that everyone start talking about death more often. This doesn’t need to involve serious sit-down conversations. In fact, sometimes easing into it with casual topics can take away the initial shock and overwhelm.

Having more casual conversations around death can improve your quality of life and presence. Ungerleider notes that her colleague Lucy Kalanithi, M.D., often says that living and dying aren’t separate things. We’re doing both at the same time. This perspective can make death a bit less scary and unfamiliar since it reminds us that while we are living every day, we are dying every day, too.

Death keeps us awake to our lives

Making an end-of-life plan probably won’t make you completely fearless when it comes to death. But there’s a chance that it can ease your anxiety around it a bit, as well as provide support to your loved ones.

5. Don’t be afraid to ask for help

If you feel strong anxiety or fear when you think or speak about death, consider reaching out to a therapist for help. They can guide you through difficult emotions that come up and process any potential trauma that could be impacting your fear of death.

The takeaway

Death doula Alua Arthur recommends making an end-of-life plan that includes preferences related to remains, funeral services, how you’ll be cared for in your final days, and other important considerations that may not be covered in a will. If you find the topic of death uncomfortable to talk about, you’re not alone. However, getting familiar with your wishes and desires may benefit your mental health and presence, and help those around you in the long run.

Complete Article HERE!

We Learned My Dad Was Dying

— And We Chose Not To Tell Him. Did We Make The Wrong Decision?

The author’s mom and dad in the garden at their home in Johannesburg during the COVID pandemic in 2020. “My dad loved gardening and growing roses,” she writes. “This is the last photo I have of him when he was still mobile.”

“Sometimes I feel pressured to confirm that he’s getting better. I can’t tell him that actually, he won’t.”

By

I walk into my father’s bedroom, and there’s a different man in his bed. I reel in shock but slap a smile on my face because I don’t want to hurt his feelings. It’s still him, but the disease he’s been fighting for the last 10 years is stealing him away from us.

My father’s bedridden, out of breath even at rest. He’s strapped to his rumbling oxygen machine all day and he’s lost so much weight that the bones in his collarbones and cheeks are straining against his skin. He has a barrel-shaped chest because his lungs are overinflated with air that they can’t process. This is what COPD, Chronic Obstructive Pulmonary Disease, looks like.

My mother calls me out of the room and into the kitchen where we huddle with the excuse of making tea.

“I asked the doctor for more antibiotics for your father to treat his cough,” she whispers in Italian.

Coughs are common for him and happen every few weeks. If not treated promptly, usually with a round of antibiotics, they can spiral into a full-blown chest infection.

“He said it’s only a matter of time before your father goes.” My mom’s eyes widen and fill with tears. “What does that mean? Where would your father go?”

I swallow hard, but my throat is concrete. We’ve been expecting this — COPD is a progressive disease, and over the last year, it’s been getting worse — but it’s still a shock.

“When’s the doctor coming?” I ask.

She frowns. “Why would he come?”

“To tell Dad that he’s dying.”

“No, we can’t tell him,” my mother says firmly. “It would make him so depressed.”

My mother is the person doctors inform about my father’s condition. With English being my father’s second language, he’s relied on her to filter and trickle the information down to him.

Over the years, when my dad was frustrated with his illness, we’d gently remind him that he had lung damage from smoking. But there’s what I call “disease denial” in my family. My parents have always tried to overcome illness by pretending it doesn’t exist. Years previously, when my father had prostate cancer, he didn’t acknowledge it was cancer. He’d call it a “crust” the doctors would remove. (Thankfully, he was fine.) Even when I was diagnosed with thyroid cancer at 35, my parents denied it completely, as though something so scary couldn’t happen. Perhaps this is how they cope.

I wonder what I’d want if I were in his position. Would I want someone to tell me that my time was limited and that I wouldn’t ever be able to step out of bed again? How would I feel if the people around me were lying to me about my condition?

A study published in Supportive Care in Cancer found that not telling a terminally ill patient that they’re dying is quite common in some countries, such as Italy, Spain and Japan — and even doctors struggle with the question of whether or not to inform their patients.

An oncologist interviewed in the study states that although a doctor has the right to inform their patient as long as this knowledge won’t harm the patient’s health, it’s difficult to know what harm could be caused by spilling the beans.

I’m now worried about what harm could be caused to my father — and us — by keeping the information to ourselves.

I’m not sure how to navigate visits with my father when the lie of his death is hanging over me, especially when he says heartbreaking things like, “Why can’t the doctors figure out how to treat me?”

This might sound strange, but my father never learned how to use the internet, so the only information he receives about his condition is from us and his doctors.

I just nod and say stupid things like, “It’s terrible… I’m so sorry…”

Even worse, sometimes I feel pressured to confirm that he’s getting better. Once the antibiotics start to clear up his cough, he says, “I think a few more days in bed, and then I’ll be able to walk around.”

What am I supposed to say to that? I can’t tell him that actually, he won’t. Or that the antibiotics won’t ever completely heal him. Instead, I say, “That’s great, Dad!”

When he begins to wrap up a phone call, I quickly slip in an “I love you lots.” It’s weird because we’ve never had a relaxed, open relationship in which saying such things to each other is no big deal. But, while he doesn’t know he’s dying, I do, and it makes me want to remind him that he’s loved. When I express such emotion, he pauses, sometimes laughs uncomfortably, or says “OK!”

If he knew he was dying, maybe he’d understand why I’ve suddenly turned into a sappy, emotional thing.

A photo of the author’s parents taken when they were dating. “My mom is approximately 20 years old and my dad is 27,” she writes. “They’re pictured at my mom’s parents’ house during the festive season. My dad’s holding a cigarette — he always loved smoking.”
A photo of the author’s parents taken when they were dating. “My mom is approximately 20 years old and my dad is 27,” she writes. “They’re pictured at my mom’s parents’ house during the festive season. My dad’s holding a cigarette — he always loved smoking.”

Lying does strange things to us. Soon, it feels like my mother, sister and I start believing our own lies. Or maybe we’re just in denial about my father dying.

“Dad’s being admitted to the hospital for another one of those chest infections,” my sister breezily tells me on the phone when he’s re-hospitalised a few months later. “Same old stuff, nothing to worry about, I’m sure.”

We’ve been on the flare-up rollercoaster a few times over the last two years and we’ve become used to it. It’s easy to forget that one of those flare-ups could lead to death. My father’s lungs are so damaged from decades of smoking that they can’t handle a mild case of the sniffles.

Denial becomes grim acceptance. I’m constantly waiting for the call that he’s near the end. My heart races and my hands shake every time the phone rings. My anxiety intensifies when doctors say his body’s not absorbing the antibiotics he’s been prescribed for his lung infection.

The fact that my father doesn’t know he’s dying means that I wait for a final conversation with him that might not happen. This deathbed talk isn’t something reserved for Hollywood movies: I’ve heard about it from friends who’ve lost their parents. The general consensus is that there’s a loving conversation between the dying parent and their children, with those last words being meant to emotionally strengthen the surviving family members.

If we’d been honest with my father about his impending death, perhaps he would’ve been in a position to initiate such a conversation, knowing that his time was so limited.

During his life, my father was always a bit of a mystery, holding his deep emotions close to his chest and sometimes choking on them the way he was now choking on air. It was rare for him to hug us or say that he loved us. I hardly ever saw him cry, except when his parents died and Italy lost the World Cup.

He became even more reserved during his last weeks. I would have loved to know what he was thinking or feeling and if he had any fears about dying, but I couldn’t chat to him about any of it.

“My father was a mystery even in the days leading up to his death, and I fear we might have had something to do with this because we kept news of his own death from him.”

Hiding the truth about his condition from him causes me to have to censor myself when this time in a person’s life should be the most honest and open.

Despite this, the doctors go along with our wishes of not telling my father the truth.

Bad things always seem to happen on a Monday morning. The call comes in at 8 a.m. The lung specialist finally gives it to us straight: My father won’t make it to the end of the day, and we have to go to the hospital right away.

My husband and I rush to see him for the last time. I’m anxious about what to expect. Will we all cry together? What will he say? How am I going to deal with seeing my father in the last hours of his life?

I push through the doors of the high-care unit and see my father lying in a hospital bed in the room ahead of me. He’s looking straight at me. Relief washes over me at the thought that we’ll be able to speak.

But as I get closer, I realize his eyes aren’t opened – they just appear that way because the non-invasive ventilator strapped so tightly over his head is pulling the skin of his face. A machine is breathing for him.

This isn’t the deathbed conversation I expected. It’s a one-way conversation in which we hope our words give him the comfort he needs to deal with the last few hours of his life and whatever happens next.

But I’m relieved I have the presence of mind to tell him, over and over again, that I love him so much. I recall research that the sense of hearing is the last one to go during the dying process.

My father’s heart is a galloping beast, still trying to ride above his drowning lungs, a superhero flying above a city that’s being destroyed. He’s still trying to cling to life, but when he slips away, it’s peaceful. How can my father, who was larger than life, have such an anticlimactic death?

He’s gone, and now I sit with the anxiety over what he must’ve been feeling or thinking as he neared death’s door. It helps me to think that perhaps he knew he was dying, and there’s some evidence of this. A few days before his death, he told my mother three men he knew from childhood visited him at the hospital. Sometimes, she saw him whispering to someone in the room she couldn’t see, deep in a conversation she couldn’t understand.

The author and her family (pictured from left: the author’s father, her sister, the author, and the author’s mom) during a trip to Italy in 1993. “We’re at my uncle's home in Milan,” she writes. “I was 12.”
The author and her family (pictured from left: the author’s father, her sister, the author, and the author’s mom) during a trip to Italy in 1993. “We’re at my uncle’s home in Milan,” she writes. “I was 12.”

After my father’s death, I try to ease my anxiety over how I can never go back in time to see him again by engaging in talk with my mother about his last days. I want all the details of what he was thinking or feeling because he didn’t tell me.

“Before he went back to the hospital for the last time, he said that he’s had a wonderful life,” my mother says. “He said he had such great daughters and was blessed.”

Hearing this is bittersweet. I wish he’d been in a position to tell me and my sister himself. Sadly, my father was a mystery even in the days leading up to his death, and I fear we might have had something to do with this because we kept news of his own death from him.

A few weeks later, I’m walking through a grocery store and regretting choosing this day to shop. It’s Father’s Day, and all the sappy dad-related songs are playing. I try to fight back the tears and the anxious thoughts that storm into me. What are the last things my father and I said to each other? I can’t remember, and it stresses me out. But then a memory sneaks into my grieving brain, bringing peace.

Two weeks before my father’s death, when he was stuck in a loop of being in and out of the hospital, he was frustrated and unsettled. He couldn’t breathe, even with the oxygen streaming into his nose, and we all took turns fanning his face with a piece of cardboard.

While everyone in the room was chatting, my father reached over and took my hand. He kept it there with him for a good few minutes without saying anything. I can’t remember the last time he held my hand. This is what I should choose to remember as our last interaction. This, more than the words we did or didn’t exchange, is what matters.

I realise that my grieving brain has been trying to hold on to the moment of his death because I’m not ready to deal with it. I find comfort in the words of Elisabeth Kübler Ross in her book “The Stages of Dying”: “There is a time in a patient’s life when the pain ceases to be, when the mind slips off into a dreamless state… It is the hardest time for the next of kin as he either wishes to take off, to get it over with; or he desperately clings to something that he is in the process of losing forever.”

Although I still wonder if my father should have known he was dying, I realise I don’t want to cling to his last hours. I don’t want to remember him being sick, when he stopped looking like himself, but I do want to remember how he held my hand in the hospital that day. I want to remember how he used to make us laugh and how he appeared to me in a dream before his death. With a big smile on his youthful, healthy face, he said, “Thank you for everything.”

Complete Article HERE!