Demystifying Death: A guide to the 'death positive' movement

A lithe woman with long blond hair hands me a small piece of paper. “It’s your death sentence,” she smiles, blue eyes alight with energy. I follow her into a tepee and join a group of women seated on the floor in a circle and unfold my paper. A horrible disease, ovarian cancer. Outside, other women are asking to join the session, which is already at full capacity. 

I am attending a death cafe session at the annual Garden Gathering, a women-only three-day spiritual retreat on Cheung Chau island that offers wellness, yoga and healing workshops. Leading the ‘cafe’ is Christin Ament, an American doctor who flew in for the event. Ament is also a death doula – a person who assists in the dying process, much like a midwife or doula in the birthing process.

She asks us to lie down and begins a guided ‘death meditation.’ “Imagine every limb ‘shutting down,’ or, better yet, ‘dying,’” Ament instructs us. She’s drawing from a Buddhist philosophy that encourages awareness about death, resulting in greater mindfulness in life.

Another exercise follows. Taking turns, the group places their hands on the heart of each participant, who has her eyes closed, and guides her towards Ament. The death doula hands the woman a candle and leads her outside. Here, the participant burns her ‘death sentence’ – the sheet of paper she was given at the start of the session – the fictitious diseases ‘dispelled’ into thin air.

Back inside the tepee, a smiling Ament looks around the group, patiently waiting for someone to chip at the silence that has descended. This part of the session – the final one – is perhaps the hardest. It’s also the main purpose of a death cafe: to share stories about death, and our experience of it.

After a few minutes, a woman speaks about a recent loss. It’s the ice-breaker Ament was expecting. Suddenly, a cascade of grief and relief is unleashed. More people – strangers, really – voice their pain, echoing one another.

Tears come fast, as do the stories: the pain of watching loved ones pass away, the paralysing shock of losing a child, the need to reconcile before it’s too late.

For Ament, such meetings are the first step towards shifting perspectives on death. “Death has historically been accompanied by fear, grief and avoidance,” she says. “The purpose is to demystify it, so that we can become more accepting and aware, and even plan, how we wish to die and, subsequently, how we wish to live. In doing so, we will hopefully remove the fear around ‘The End.’”

A global movement

Anxiety, fear and even fascination with death are nothing new. It wasn’t until 15 years ago, however, that the first ‘death cafe society’ – a gathering to discuss death – was thought to have been established. Behind the concept was Jon Underwood, a business strategist (and a Buddhist) with a penchant for contemplating the philosophical questions of mortality.

Influenced by the so-called cafe mortels, a series of events started in 2004 by Swiss sociologist Bernard Crettaz that sought to break the “tyrannical secrecy” surrounding the topic of death, Underwood held
the first death cafe in an east London basement in 2011. Underwood wanted to create a taboo-free environment where people could “drink tea, eat cake and discuss death.” 

We should rehearse our death, so that we are able to live more fully…

Syv Bruzeau, author of Standing Naked in Front of You

Today, the concept has spawned a global movement, reaching some 64 countries and, to date, over 7,600 gatherings. The typical format is that of a discussion group, whereas Ament’s meditation-style session was specifically tailored for the Garden Gathering.

For many, death cafes are just one element – and the entry point – to the so-called death positive movement, a social and philosophical approach to mortality that, in recent years, has spread from London and  Los Angeles to major cities in Asia, including Hong Kong.

Drink tea, eat cake, discuss death

The death positive movement made its first entrance in Hong Kong about five years ago thanks to end-of-life activist Carmen Yau. After 10 years of working at Families of SMA Charitable Trust, an NGO for people with muscular dystrophy (a condition she too suffers from), Yau was emotionally drained.

“I was torn up from watching patients die,” she recalls. “It was breaking my heart. I decided to move in another direction.”

An online search led her to discover the death cafe franchise. The informal approach of the gatherings – drinking tea and talking about death – resonated with Yau. When she contacted the website about bringing the concept to Hong Kong, she learned that, coincidentally, two of its US members would be in town to take part in the International Conference on Grief and Bereavement in Contemporary Society (a triennial knowledge-exchange for scholars, leading healthcare professionals and experts in Thanatology, the scientific study of death and associated practices), and host a death cafe session at Hong Kong University as part of the conference.

Alongside university staff and NGOs, Yau helped organise Hong Kong’s first death cafe in June 2014, with around 30 participants. Since then, more than 10 death cafes have taken place in various locations around Hong Kong, including art centres, book shops, and coffee shops. Over time a number of individuals have taken up the initiative, including a group of students.

For instance, 21-year-old Chuk Ka Lok, a Chinese University of Hong Kong student who goes by Louis, and a group of peers organise death cafes at the Stay Within Bookspace in Chai Wan.

“In Chinese society, we cannot talk about death. But the movement has allowed me to remove the stigma from it,” says Lok, lamenting the caveat that it’s always more challenging to open up to those closest to you. “I still cannot tell my parents I am hosting a death cafe. I’m just hosting a cafe – I’ll put it that way.”

The gatherings consist largely of people aged 31-50. Participants tend to be those who are directly affected by death, such as nurses, palliative care workers, caretakers, people with terminal illnesses, and those in the last stages of their lives.

“We observed that Hong Kong people understand and learn about death through sickness and in hospitals, but we want to broaden the story and perspective on life and death,” says Lok. “So we collected some books on war, poverty, mental illness, animals and also the environment, as these topics also offer another way to approach the subject.”

The students hope what they discuss during the cafes will stay with the attendees beyond the gatherings. “We share suggestions on how to initiate the conversation at home, with friends and in the workplace,” he adds. “[Hopefully] this will help people to be open-minded, listen to their peers’ ideas and share their feelings. To have a supportive conversation about life and death. Death can create meaning, and death can create bonding.”

Dance performance at DEATHFEST.

Embracing death in Asia

In addition to death cafes, a number of Hong Kong organisations  have tailored the death positive movement to engage local audiences through art, music and performance.

“I have friends and peers who are running the Death Bookshelf, collecting books related to death,” Yau says. “And [Hong Kong] also hosted Asia’s first Death Festival.” Or, as it’s best known, DEAtHFEST, an event created by Arnold Leung, a registered social worker and fellow in Thanatology.

The inaugural festival took place over three days at the Hong Kong Polytechnic University in June 2015, and included 72 workshops spanning sculpture, painting, dance, drama and Chinese painting, with over 30 artists involved. A series of lectures included topics such as palliative care, bereavement and advance directives (a legal document that outlines a person’s preferred healthcare treatments if they can no longer make decisions for themselves).

“DEAtHFEST promotes life and death education in Hong Kong,” Leung explains. “I am trying to make death more interesting. That’s why I bring the arts into the conversation.”

For example, the festival featured an award-winning local musical called The Passage Beyond, a collaboration between Hong Kong Sinfonietta and Actors’ Family, which tells a story about life, death and love. The performance encouraged audiences to think more deeply about death and, consequently, be more open to discussing it, says Leung. 

“In Hong Kong, many elderly have their funeral preparations in place, but their children refuse to talk to them about it. The elderly can feel confused about this,” says Leung. The proximity to death enables senior citizens to envisage the end of their lives with more immediacy, according to Leung, whereas “youth are generally distant from death. Thinking about it is too scary for them.”

In 2018, DEAtHFEST expanded to Kuala Lumpur, Malaysia – taking place in a funeral parlor. Leung’s long-term vision is to have annual events and to take the festival beyond Asia, but finding sponsorship can be challenging. The next edition, funding dependent, will happen in either Taiwan or Singapore, where Leung has tapped into the local death positive community. 

Taiwan, in particular, seems ripe for a festival of this kind. Leung says that the country has been a pioneer in the promotion of life and death education. In the 1990s, Taiwanese scholars returning from the US, where the concept of ‘death education’ has been in development for nearly 40 years, brought the scholastic approach home with them.

“In the US and Europe, we can talk about death studies, but in Chinese culture, we talk about ‘life and death’ education. We all know Chinese people don’t like to talk about death, so why did the Taiwanese begin this conversation in the 1990s? Natural disasters, from earthquakes to typhoons, triggered the need to think about death.”

Similarly, Hong Kong’s rising interest in the subject relates to societal issues, says Leung. “Hong Kong, much like Singapore, has a rapidly ageing population. This leads people to consider better and more peaceful ways to die and seek alternatives to cold hospital environments. Society is pushing for more conversations around death.”

The power of conversation

A French author based in Japan, Syv Bruzeau penned Standing Naked in Front of You, a personal narrative about surviving cancer and fibromyalgia (musculoskeletal pain accompanied by fatigue, memory and mood issues). The book tackles taboo subjects like suicide, depression, and the myth of perfect health.

Last year, the author travelled to Hong Kong to partake in the Garden Gathering. She heard about Ament’s death cafe and, already familiar with the concept, was curious to experience one in person. 

“It was a powerful, liberating experience,” she recalls. “My ‘death sentence’ was a type of cancer I actually had a few years ago, so the whole exercise of dying, healing and recovering had a very special meaning to me.

“Being able to talk openly frees us from the weight of it. Death becomes less dark and fearful, more like a natural aspect of life. The whole experience is a reflection on both death and life, and that’s highly valuable.”

Hong Kong journalist Leila Chan echoes the importance of talking about death. Chan, who has authored several books on ageing and palliative care, has been reporting on end of life care in Hong Kong over the past eight years.

“We should start talking about it at the dinner table,” she says. “There is so much to think about when it comes to options.” Those options can range from choosing a place to be buried or cremated to refusing treatment altogether, financial challenges, hospice care, and organ donation. When it comes to organ donation, Hong Kong has one of the lowest rates in the world, with only 5.8 donors for every million people in the city, according to a 2016 LEGCO report. That would suggest a total of 42 donors in a city with a daily organ transplant wait list of over 2,000 patients.

These are the types of decisions that Chan helps families tackle in her workshops on end-of-life care. “When participants discuss death planning seriously, they realise there are a lot of things [to prepare] that they had not imagined before. Before the workshop, they thought they were very decisive and could just keep everything simple.”

Chan’s workshops enable participants to break down the decision-making process, understand the complications, and exchange views with their families. Some participants have expressed interest in attending annual workshops to explore changes in their perspectives and talk more with their loved ones.

Clinical psychologist Ginette Cheung, who provides bereavement counselling, agrees that communication is invaluable particularly when it comes to emotions, such as anger, guilt, and grief. “The dying process is a lonely journey. No one exactly understands how the patients feel and what he or she is experiencing” she says. “Many people avoid discussing end of life matters because of fear – of separation, of uncertainty, of being forgotten.” 

The death positive movement seeks to take the most human of life experiences – death – and bring it out of the cold shadows, into the light of the living. From death meditation in a tepee to cafe meetups around the world, more and more people are talking about death – bringing them closer to loved ones and more accepting of the inevitability of mortality.

“We should prepare ourselves for death, so that we are able to live more fully, with more gratitude, ease and less fear and regret,” Bruzeau says. “Death can be beautiful and peaceful.”