Depression, fear and deterioration

— Why some Asian families avoid speaking about death

When Mishelle Tongco’s grandfather was given 30 days to live, her family decided not to tell him.

By Mishelle Tongco

My Filipino-Chinese grandfather taught me many things as I was growing up — from how to make spring rolls to the importance of family.

One of the most important lessons he passed on, was that no good ever comes from lying, no matter the circumstances.

“We must obey the word of the Lord,” he would tell us.

But for the last month of his life, my whole family and I withheld the truth from my grandpa.

In April last year, after more than two years on dialysis, he was given a month to live — and we decided not to tell him.

Lady sitting in front of a grave
Many Asian families believe that hiding information will protect their relatives from emotional harm.

Being born and raised in Australia, I did not understand what was happening — I thought this was something that only happened in my family.

But families withholding information about a life-threatening diagnosis is actually common practice in Asian cultures.

It is believed that speaking openly about death can do more harm than good, bringing bad luck, fear and emotional pain.

Yongxian Luo, a professor of Chinese studies at the University of Melbourne, said Asian families regularly chose to hide the truth about a terminal illness from their loved ones to protect them.

Professor Luo calls them “non-disclosure topics”.

“Certain topics, which are common for people to talk about in Anglo-American culture, are taboos or at least not preferred in discourse,” he said.

“For non-disclosure topics, the major difference is that Asian cultures do not want to talk about negative things.”

A headshot of Dr Nicola Atkin.
Dr Nicola Atkin says some cultures put more emphasis on familial responsibility and less on individual autonomy.

Dr Nicola Atkin, from the Peter MacCallum Cancer Centre in Melbourne, said that in her experience caring for patients and families from Asian cultures, they often put a greater emphasis on the patient as part of a family and community than on individualism.

“Some cultures have far less emphasis on the individual and individual autonomy but more on relational autonomy and a view of the patient in the context of their family, community and culture,” she said.

“This focus from family members on non-disclosure often goes hand in hand with a very strong sense of responsibility and duty to protect and care for their loved ones.”

Professor Luo said this emphasis on family shaped how people in Asian cultures engaged in most social and interpersonal relationships.

“Mutual trust is a top priority,” he said.

“In Hong Kong, a number of successful family businesses don’t hire outsiders because family members are more trustworthy.

“This is something Asian people would bear in mind when they think about social relationships.”

Sometimes these conflicts between Eastern and Western values can happen within families, particularly those in the diaspora.

A still from the film The Farewell showing a family standing and looking at the camera.
The Farewell is about a Chinese family who decides not to tell their grandmother that she is dying of cancer.

Based on her own experience dealing with her grandmother’s cancer diagnosis, US filmmaker Lulu Wang wrote and directed The Farewell, a 2019 drama/comedy that explores the cultural differences in approaches to death.

In the film, the mother of the central character, Billi Wang, relates a saying in China: “When people get cancer, they die. It’s not the cancer that kills them, it’s the fear.”

So when Chinese-born American Billi’s “nai nai” (grandmother) is given a few weeks to live, her family decides not to tell her.

The family struggles with this decision, especially Billi who believes her grandmother has the right to know.

“Isn’t that wrong to lie?” Billi asks her grandmother’s doctor.

“It’s a good lie,” he responds.

In Asia, doctors will generally comply with a family’s wishes when disclosing a diagnosis, using less specific and threatening terms such as “fever” or “sickness”.

Dr Atkin said both the family and patients usually shared the same attitudes when it came to this practice.

“Families have stated that they believe the patient will become depressed, lose all hope or deteriorate more quickly if they know the details of their disease or their prognosis,” Dr Atkin said.

“Usually the patient has been happy to delegate to family members or has wanted limited information and the family have been relatively accepting of this.”

A woman with her arm around a child near a grave.
Sarah Jones feared that her children would get depressed if they found out about her prognosis.

However, Dr Atkin said the practice of “non-disclosure” in Western countries could present conflicts between ethical principles which needed to be “weighed against each other”.

“Modern Western cultures tend to have a strong focus on the importance of the individual patient’s autonomy, and the individual making decisions about their own healthcare based on the full information provided by medical teams,” she said.

“Withholding information and making treatment decisions without the patient’s involvement can result in a form of paternalism, affect the patient-physician relationship and the patient’s trust in the doctor.”

Meanwhile, Elizabeth Utting, a senior associate in medical negligence at Law Partners, said as well as the ethical implications there were also legal ones in Australia.

“A medical negligence case could arise where withholding such a diagnosis meant that the patient could not receive medical treatment they required to improve their illness or prognosis,” she said.

“A medical negligence case could also arise if a patient’s prognosis was not communicated to the patient, and the patient suffered mental harm as a result of the delay in informing them of the prognosis.

“A doctor’s ethical and legal duty lays with their patient, not their family members.”

An act of love?

It’s not just children who withhold information from elderly parents.

For Filipino-Australian Sarah Jones it was the other way around.

She was 59 years old when she was diagnosed two years ago with terminal uterine cancer and given three months to live.

Her sister, Jessica Cruz, told the ABC Ms Jones decided to keep the prognosis a secret from her children.

“Only my brother-in-law and I knew,” said Ms Cruz, who asked to use pseudonyms for herself and her sister.

“She begged us not to tell her children about it. She continued to tell her kids that it was curable.”

Ms Jones worried about her children’s mental health and was afraid they would get depressed.

“She just wanted them to live a normal life,” Ms Cruz said.

When Ms Jones lost the ability to walk, Ms Cruz told her it was time to tell her children.

“I told her that they had the right to know and that they would understand — but really, I just wanted them to stay with their mum because time was running out,” she said.

Child holding a bouquet of flowers in front of grave
Sarah Jones died four days after turning 60 in hospital.

Her children found out about her condition from their father, and after seeing her son cry Ms Jones was upset.

But the next day she felt better about the situation.

“They were now prepared,” Ms Cruz said.

“There were no more secrets.”

Deputy director of palliative care at Melbourne’s St Vincent’s Hospital Jennifer Weil said there were many cultural, religious, and personal factors that went into decisions about how much information people wanted shared, especially in relation to terminal illness.

“The challenge for us as doctors is to seek to explore and understand, and avoid our own beliefs and values directing how we share information,” she said.

A women smiling at camera
Jennifer Weil says doctors need to make the effort to understand cultural beliefs.

Dr Atkin said if a patient, based on their cultural beliefs, decided not to have their diagnosis or prognosis disclosed to them, it did not necessarily go against the principle of autonomy.

“My approach is to understand the wishes, preferences and concerns of the family and the patient regarding medical information, explore these sensitively and reassure the family that their loved one will not be given information they don’t want to receive,” she said.

A good lie?

During the first few days after we got my grandpa’s prognosis, I did not want to lie to him — but I felt I had to respect my family’s decision.

Then, towards the end, I began to understand where my family was coming from.

We lied to him because we loved him. We wanted my grandpa to live his last remaining days in happiness instead of pain and grief.

And he did.

A close up of an older person's being held by another person.
Mishelle Tongco’s family spent their last moments with her grandpa in peace.

The last time I saw my grandpa was the day before he died at a hospital in Melbourne’s western suburbs.

Surrounding his bed was his wife, children and grandchildren. We all stood quietly.

“Thank you, my wonderful family,” he said as he looked up at the faces of his loved ones.

“I’d like to go home now.”

He closed his eyes.

“You will go home soon,” my sister told him.

“We will be at home waiting for you.”

Complete Article HERE!

Death Cafes

— You’re Going Where?

By Marilyn Mendoza

The Death Positive Movement

In Victorian England, death was in the forefront of society. People would begin talking and planning for their death when they were young. By the time someone died, there was no doubt about what was wanted and how it was to be carried out. Women would even make their shrouds to be included in their wedding dowry.

Since that time, we have made a complete reversal in how we deal with death, from being the center of one’s life to rarely being discussed. However, continuing to ignore it will not make it go away. Death is coming for all of us.

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In 2011, the Death Positive Movement began. Since then, it has been providing opportunities for people to talk more openly about death and dying. Its goal is to decrease the stigma of death. However, many people are still unaware of the movement and the activities associated with it. Perhaps one of the better-known activities associated with the movement is the Death Cafe.

Quite simply, Death Cafes are places that you can go, for free, to feel comfortable and safe talking about death. Actually, you do not even have to talk if you don’t want to. There is no planned agenda, and anyone can bring up a topic to discuss. It is free. Cake and tea are always served and sometimes other beverages. The Cafes are currently found in at least 80 different countries. Sometimes the group may be run by a mental health professional, though most of the time it is someone who has no training in groups or mental health.

While Death Cafes are not meant to be support or therapy groups, I have generally found that people who attend these meetings are warm and supportive of each other, sharing a common bond in accepting mortality. Other activities associated with the movement are Death with Dinner and Coffin Clubs. Often Death with Dinner consists of smaller groups who might get together at someone’s home for dinner and discussion about death.

Coffin Clubs have been popular in New Zealand, England and Ireland, although I am unaware of Coffin Clubs in the United States. People get together to build, decorate and try out their coffins. Members enjoy being with each other. It is a safe place to talk about their lives and future death. An additional benefit to the Coffin Club is the significant amount of money saved by building their own coffins.

Death Cafes and Therapy

Of the three activities, my clients and I have experienced the Death Cafe. I attended the first Death Cafe held in New Orleans and was amazed by the number of people who came. It was a mixed group, with some being from the medical and mental health fields, while most of the others were from the community. They had heard about the Death Cafe and came to see what it was all about. It was a unique experience.

You don’t usually find people sitting around talking about death. However, it was very encouraging. For over an hour, we introduced ourselves and talked about what had brought us to the meeting. Some came due to curiosity, some due to the loss of a loved one, and some with their own terminal condition. All were interested in discussing and learning more about death. It is good to be able to see that others have the same concerns and fears about dying as we do.

During the meeting, I began to reflect on the people in my practice who might benefit from this experience, and then I thought about Sarah. Sarah was a 74-year-old woman who came into therapy to talk about her declining health. She had been diagnosed with congestive heart failure, which was worsening. She felt that she would not be alive for much longer and wanted to talk about dying.

The problem was that her family did not want to accept her impending death or talk about it — an all-too-common experience. I talked with Sarah about considering attending a Death Cafe meeting. It didn’t take much to convince her.

The following week when she returned, she talked about her experience and how it was like a “breath of fresh air” for her. “People were so welcoming and open,” she said. “It was a relief to be able to talk about dying and not feel guilty. I’m glad I went. I feel like I learned a lot.”

The meeting seemed to empower Sarah. She decided that she wasn’t going to wait around for her family and that she just needed to take charge of all the planning herself so she could have everything just the way she wanted. She began to plan her funeral, the music, and the dress she wanted to be buried in. She picked out her gravesite and even designed her own headstone.

I have also encouraged trainees who were interested in palliative care to have the Death Cafe experience. It has been a great learning tool and helps them to be more comfortable when talking about death with others.

Tulane Medical school has also been in the forefront of utilizing the Death Cafe as a way to address burnout in medical staff who work in high death areas such as the ICU. The meeting I attended included medical staff who worked together on a surgical unit. A child had died in surgery, and the doctor who had performed the surgery was sharing the impact on him as well as the other staff present.

It was very touching to hear him. His pain was almost palpable. Perhaps most striking to me was the atmosphere of the group that allowed him to be open with his feelings of sadness and to cry at the loss of his patient. There are perhaps many different providers who work with the dying that could benefit from debriefing Death Cafes.

Of course, not everyone is enthusiastic about learning more about death. In my practice, I have found that women tend to be more open to the idea than men. There was one situation that has stayed with me for years that demonstrates the power that the fear of death can have: Patricia was brought to therapy by her husband at her doctor’s request. She had been quite ill and recently diagnosed with cancer. Her husband brought her in because the doctor said she was depressed.

It was hard to determine if she was more afraid of her husband, or of dying. One day, she told her husband what we had been talking about. He flew into a rage and would not let her return. It is this fear that speaks to the need for Death Cafes to normalize the process and free people up to talk about what is ahead for all of us.

The Death Cafe has a saying: “talking about babies won’t make you pregnant and talking about death won’t make you die.”

Complete Article HERE!

The uphill battle for LGBTQ people after death

The Louisiana LGBTQ+ End of Life Guide. Though it was made with Louisiana’s laws in mind, creators of the guide are hoping to adapt and expand it to every state in the country.

By Katy Reckdahl and Christiana Botic

Three years ago, Robert Turner, a retired computer analyst in New Orleans, was diagnosed with Parkinson’s disease. So far, Turner, 63, only feels slightly stiff and a bit slower in his motion. “I tell my doctor I’m on the 20-year plan of surviving this,” he said.

Still, because Parkinson’s is progressive, his sister, a geriatric nurse, imagines the worst.

So Turner spent part of last week leafing through the 35-page Louisiana LGBTQ+ End of Life Guide, created in New Orleans about a year ago. It’s thought to be the first of its kind in the United States.

He’s been focused mainly on the guide’s first of four sections, called “When You’re Well,” which deals with Louisiana law and death planning, advance directives and wills. “I’m not ruling out a future husband, but there’s not one currently,” he said, as he outlined where his possessions will go and who can make funeral arrangements for him.

Robert Turner at home in New Orleans. He has Parkinson’s and is utilizing the Louisiana LGBTQ+ End of Life Guide.

Turner understands the stress of not having the proper legal framework in place when a loved one passes. “It’s just one of those things that we all put off and we all need to do,” Turner said. “My first husband died of AIDS in the early ’90s. We had scheduled a lawyer to come visit him in the hospital the next day, and he died that night.”

“Louis was really my first boyfriend, my first partner, my first husband, even though gay marriage was, of course, not legal in Louisiana then,” Turner said. “I didn’t have anything legal to show for his estate that he was my partner.”

A handmade magnolia wood urn holds the remains of Turner’s late husband, Louis Magee, who died at 38.
Turner looks at a photo of him and Louis.

The guide is the brainchild of Ezra Salter, 31, a funeral director in suburban New Orleans.

The onus to create this comprehensive guide came after Salter started dating their partner, Keira, a transgender woman. Salter, who identifies as nonbinary, was shocked at the disapproval that came from family. Salter feared what might happen if one of them died but couldn’t find a centralized, readily accessible resource to help them navigate the issue.

Neither of the pair have changed their names legally, and though relationships with family are improving, the tensions have remained. Salter’s parents haven’t met Keira during the 10 years they have been together. Some members of Keira’s family still refer to her by the name she was given at birth, known as a “deadname.”

Nonbinary funeral director Ezra Salter, who created the Louisiana LGBTQ+ End of Life Guide, at Metairie Cemetery.
Salter walks through Metairie Cemetery.
Salter holds Keira’s hand. The married couple have been together for 10 years.

In collaboration with several experts, Salter published the Louisiana LGBTQ+ End of Life Guide in 2022.

Salter said they frequently hear from guide users that “‘I never thought of this, I thought that power of attorney was enough,’ and not fully understanding the depth of what they need to protect themselves.”

“Getting documents in line prevents some heartaches,” Salter said of planning for death for unmarried couples in the LGBTQ+ community. “It’s difficult to see someone struggle with the idea that the husband who they used to sleep next to every night is sitting dead in a cooler because you can’t cremate them earlier unless you have this magic piece of paper.”

The family tension Salter speaks of is a common experience among members of the queer community. It makes the guide a necessity.

Salter and Keira, left, watch television at their home.

Nicholas Hite, of the Hite Law Group in New Orleans, founded his own law group in 2013 and focuses on LGBTQ+ representation. “Part of preparing, legally, for death is understanding that it’s most often not a lightning-bolt moment, where you’re alive one minute and dead the next, because of medical care and the nature of modern life.”

“For queer folks, your biological family — the people who are legally the next in line to make decisions — are oftentimes the last people that you want making your decisions,” he said. “So you need legal paperwork allowing your most closely held individuals — who aren’t necessarily married to you or related by blood — to be in the hospital and at the funeral home with you and on your behalf.”

Lawyer Nicholas Hite at his office in New Orleans.

Three years ago, because Ellen Stultz lacked such paperwork, she spent three months trying to claim the body of her close friend Oscar White, 62, who died without a partner or known family. “The situation was hard for me, still is really hard for me,” said Stultz, who has fond memories of French Quarter strolls and whiled-away afternoons at White’s apartment with his little family of adopted stray dogs.

After two months, she started to worry that White would be buried in an unmarked grave. She called the morgue every day, then connected with Salter through mutual friends. Within a week, she’d received a box in the mail containing White’s ashes.

Ellen Stultz saved the USPS box that conveyed the ashes of her friend Oscar White.

“His death was so traumatic,” Stultz said. “Yes, this is something that happened, but it seems like it doesn’t have to.”

Stultz did all she could within the system to claim White’s remains. Though no one else was requesting them, the state would not release the remains because she was not a blood relative. “When I first called the morgue, they were like, ‘Wait and see if any next of kin comes to claim his body.’ And at this point, he’d already been there a month. They didn’t really have much advice except just, ‘Keep calling,’” Stultz said. “Once I got Ezra involved, having someone to advocate for me, that’s all it took.”

Stultz holds White’s ashes.
Stultz holds photos of White and their group of friends in New Orleans.

For gender-diverse people, death arrangements have added complications, said Salter, who often hears the same questions again and again. “Who’s going to handle my body when I die, and how can I make sure that they use the right name and the right pronoun?”

“As I became trained in funeral service, I asked specific questions a lot, to every professional I met,” Salter said. “I’d raise a lot of hypothetical questions —“I’m asking for a friend.” I made it my business to get these answers because it was not clear anywhere online. I kept what I call a ‘chaotic Google Doc’ of everything I knew about funeral services.”

“I put my own life and, sort of, my own transition on hold to gain knowledge and work in a system, so that I can then go help people outside of the system who still need to interact with this institution and, you know, bridge the gap,” Salter said of working in the corporate funeral industry.

Salter holds a casket key they use at the funeral home where they work.
Makeup used to cosmeticize the dead.
The parlor room at Salter’s funeral home.

Hospital policies rarely deal with what gender (or nongender) should be assigned on death certificates, said Dietz, a contributor to the Louisiana guide who works as an advocate for transgender health care. (Dietz uses a mononym, without a surname.)

Most often, gender determination is made by the doctor signing the death certificate. But gender markers from medical records can be unreliable, since transgender people who still need prostate exams or Pap smears — considered “gender-specific care,” may retain their birth gender, even if they change gender on driver’s licenses, Dietz said.

“Oftentimes, life feels so overwhelming to LGBTQ+ people, depending on your layers of intersecting identities that are oppressed. So it can be really hard to prepare for death when we’re trying so hard to live,” Dietz said.

Because laws and institutional policies vary greatly between states, the creators of the Louisiana guide hope to create similar guides for every state, through a partnership with the national death-care advocacy group the Order of the Good Death.

Dietz, a contributor to the Louisiana LGBTQ+ End of Life Guide, at home in New Orleans.

In Louisiana, all powers of attorney expire at the time of death, said Liz Dunnebacke, who helped publish the guide through her New Orleans nonprofit, Wake, which provides death-care information and resources.

So even if someone has prearranged their own funeral, their next of kin can legally override those plans. “Your estranged mother can blow in 30 years later, order a full Catholic service with rites and exclude your chosen family from the ceremony,” Dunnebacke said.

That nightmare can be averted through the Funeral and Disposition of Remains Directive, a newly minted, two-page form. “The legal code existed, but no document. So we created one, which we now make available,” Dunnebacke said.

The directive, once notarized, identifies who will make decisions about physical remains and funeral ceremonies. It is an essential step, both legally and emotionally, Hite said.

“You know, many of us spend our entire lives fighting to get control and autonomy over our bodies,” he said. “The guide empowers folks to continue to maintain control over themselves, even after they’re dead.”

Complete Article HERE!

Rabbi Laura Geller helps people ‘get good at getting older’

By Shannon Levitt

A few years ago, when Rabbi Laura Geller was still the senior rabbi of Temple Emanuel in Beverly Hills, California, she began to notice that many of her older congregants had started to drift away and she wanted to know why. At the time, she was also contemplating what her life after retirement might look like. So, she and her husband, Richard Siegel, decided to take the questions they were already posing to themselves and ask them of other seniors.

So began a listening journey that would result in “Getting Good at Getting Older,” a National Jewish Book Award finalist published in 2019.

Gathering small groups in private homes, Geller and Siegel spoke to about 250 congregants about what keeps them up at night, what gets them up in the morning and, without a job and colleagues, who they turn to for community.

“What we discovered is that people have fears of becoming invisible and becoming isolated. Your friendship network changes as you grow older and people that used to return your calls don’t anymore. People were concerned about purpose — “What will I do all day?” — and about becoming, “God forbid,” dependent,” Geller told Jewish News.

On May 3, Geller will present some of her findings about the importance of continually building relationships, making a difference, getting involved and giving back at an invitation-only Lion of Judah “Cocktails and Conversations” event.

“After hearing Rabbi Geller’s presentation at the International Lion’s Conference in Scottsdale this past December, we thought she would be the perfect speaker for our upcoming event,” said Gail Baer, vice president of philanthropy for the Center for Jewish Philanthropy of Greater Phoenix.

Geller’s book investigates the period between midlife, when people build careers and raise families, and “frail old age” — what gerontologist Barbara Waxman termed “middlescence.” Just as adolescence came to be understood as a distinct stage of life, neither childhood nor adulthood, the longevity patterns of this century have constructed something new at the other end of the age spectrum.

At last December’s conference, Geller attended two “overflowing” seminars on the topic led by Waxman.

“A lot of people want to talk about this and learn how to engage the experience, the talent, the passion, the resources of this age cohort,” Geller said. The day after her own book on the topic was published, it was number one on Amazon’s Jewish life section.

The book was also a kind of bookend to the seminal “Jewish Catalog,” the series of guides to “do-it-yourself” Judaism that Siegel had co-edited decades earlier. It was a best-seller for the Jewish Publication Society and attracted young Jews by popularizing an ethos of pluralism and gender egalitarianism.

Because Siegel and Geller were now themselves part of a cohort of older Jewish Americans facing new issues, “Rich really felt that we needed another Jewish catalog about how to navigate the challenge of growing older,” Geller said.

Sadly, while working on the book, Siegel was diagnosed with cancer and passed away before its publication. He was in the strange position of working on a book about getting older, a privilege he wouldn’t experience for himself. Ironically, the couple researched things for the book, like end-of-life issues and how to plan a funeral, that they used to deal with their personal situation.

“When Richie really did get sick, he had a really good death because there was nothing we hadn’t already talked about. A good death is if you’re lucky enough to be able to die at home, surrounded by people you love and there is nothing left unsaid. I’m very grateful for that,” Geller said.

During their listening campaign, Geller was surprised by how many people hadn’t had some of those tough conversations with their adult children. The book provides a how-to toolkit for people for that and many other topics, including making friends, giving back, getting involved, leaving a legacy and telling one’s story before it’s too late.

After the book’s publication, Geller was invited to speak at synagogues and Jewish community centers across the country. Once COVID-19 restrictions made travel impossible, she started doing virtual presentations.

“It was a wonderful opportunity to visit lots and lots of places because the cost was so much lower, and I spoke to at least 100 places virtually,” she said. Sometimes it was to a group of 20 people and sometimes more than 100. Despite the size, it was clearer with every conversation how much people wanted to talk about their fears and hopes.

During the Q&A period, someone might ask for advice on how best to downsize their households or give things away. Another person might chime in to say what they had done. Though these people might be in the same congregation, they didn’t know each other well enough to ask these questions before Geller’s appearance prompted them.

“Through these conversations, they were able to help each other because, even though we are the curators of our own lives, the truth is we are all figuring out what it means to be in this new life stage and we can really help each other do that,” Geller said.

While promoting the book, Geller kept learning, and if she were writing it again, she would likely spend more time writing about loneliness and isolation, she said.

A majority of people she’s spoken with want to stay in their homes, but that might entail several changes in terms of creating or modifying their community. A focus on building intergenerational connections can assist with that goal.

She also has a message for the Jewish establishment that focuses most of its resources on families with young children, which she calls “a myopic view.”

“I’m also part of the Jewish future with my experience, my wisdom, my resources, my talent, my desire to serve and my need to be in connection with different generations. That’s an asset in the Jewish community and to the extent to which that’s not acknowledged — they’re losing an incredibly important talent pool and that challenges the Jewish future,” she said.

Complete Article HERE!

‘A space to feel at ease with dying’

— How video games help people through grief

Players have long found a refuge from grief in video games – and a recent wave of games is tackling this difficult theme head-on

By Emma Flint

When James’s father died, he did what any of us would do in the throes of grief: he sought comfort. He went looking for it in the expected places – friends, family – but he found it somewhere unexpected: in the video game The Legend of Zelda: Majora’s Mask.

“Dad had always loved games. He gave me his NES when he got the SNES, and my formative memories were playing Mario Kart 64 with him, my uncle, and my little sister. Shortly after my father passed, the Wii added some N64 games to its catalogue that I had loved to play growing up, and that started the journey I needed to take to forgive him,” says James. “I had felt abandoned by him – when I was right at the shifting point of puberty, about to learn how to drive, he just wasn’t there.

“Majora’s Mask was always one of my favourites; I had the strategy guide and would read it to my dad in the truck when I would go with him to work during the summer. When I revisited it, I distinctly remember crying when I walked through the tunnel to the clock tower after the intro, knowing it was the first time I’d done it without him … People have theorised that Majora’s Mask symbolises the five stages of grief, and when I started to look at the game this way, it eventually helped me to visit his grave alone for the first time since his funeral, about a year after his death.”

The Legend of Zelda: Majora’s Mask.
The Legend of Zelda: Majora’s Mask.

James is one of many people who’ve found a route through grief in video games. It’s often assumed that we long for avoidance when we venture into imaginary worlds – and they can indeed offer vital escapism when the real world is difficult. But the nature of video games demands active participation, which can help players to process their feelings, free from real-world expectations about correct ways to grieve.

“What I’ve come to realise recently is how closely intertwined video games and nostalgia are,” says Stephen Sexton, author of the poetry collection If All the World and Love Were Young. “If you’ve spent a lot of time with a video game, its spaces and places become familiar to you, encoded in your memory. For me, the idea of forgetting the experience of grief was frightening. So, I found myself pinning my grief narrative – my mother’s illness and death – to something familiar: the levels and environments of Super Mario World. It’s become a kind of mnemonic device for me … the video game world became the bewildering world of grief; bright, overwhelming, symbolic.”

In recent years, several games have been made about the experience of grief itself, such as Gris, Spiritfarer, and Lost Words: Beyond the Page. In each of these examples, the labyrinthine complexities of grief are explored through a protective lens, letting us care for and guide grieving characters, enabling close proximity to our emotions while simultaneously shielding us from them.

Sometimes the guidance is subtle, delicately interwoven in a larger overarching story, as with Lost Words. But in games like Spiritfarer and Gris, we take an active hand in proceedings. These are potent narratives about death and the human experience that let us freely choose how to engage with them. “Loss is an intimate, personal experience,” Nicolas Guérin, Spiritfarer‘s creative director, explains. “And video games allow users to have an active, interactive introspection window, at their own pace.”

Spiritfarer characters on Deck.
Spiritfarer characters on deck.

In Spiritfarer – a game about housing troubled spirits on an ever-expanding houseboat, until they work through their unfinished business and pass on to the next realm – you (initially) can’t remove the houses of spirits who’ve crossed over. The limited space on your boat is taken up by seemingly redundant buildings, and we cannot ignore them. “Many players (and even people on the team) didn’t understand why they couldn’t remove these houses from the ship,” says Guérin.

“As an answer, I would remember a specific time in my life, which was when I was a young teenager, and my mother’s cousin had died. She was a lonely person, and kind of a hoarder. Her house was choked full of things, and my mother had to sift through them. Souvenirs from travels, tchotchkes from unusual hobbies, family mementoes. These objects form a trace of you; haphazardly assembled physical heritage, both dramatic and absurd, of the life you’ve had. Having to keep the departed spirits’ homes was exactly that … their home represented the burden of memories.”

Like novels and films, games can also offer hope, a route out of an emotional state that might feel inescapable. “Lost Words: Beyond the Page provides an example of how someone can get through this (which can be hard to see when you are in the middle of grief), and the strategies that other people use to manage and process their loss,” says Caitlin Hitchcock, a clinical psychologist and researcher at the University of Melbourne, who also acted as a consultant on the game. “Much of this is subtle – narrative is just one aspect of a video game. People who might be hesitant to watch a film about a young woman processing grief, might be more likely to play a video game. The game takes a hard topic, which many of us avoid, and presents it in a more palatable context.”

Lost Words: Beyond the Page video game screenshot.
Lost Words: Beyond the Page.

Games have the power to normalise grief and offer comfort and, as all art does, they can help us find meaning in our trauma so that we can overcome it. “Avoiding thinking and talking about the loss can maintain poor psychological wellbeing,” explains Hitchcock. “Playing a game about someone else’s grief is going to trigger thinking about your own grief, due to the way that associations between information are formed in the brain. A game can therefore reduce avoidance of your own grief, but potentially in a way that is less confronting or painful.”

Games about grief don’t necessarily intend to educate. Instead, they offer a sense of belonging to a universal experience; they can normalise death. “We never meant to impose a grand meaning or give a lesson with Spiritfarer. We just tried to open up a space for players to feel at ease around people who were about to die, to view death as a simple, undramatic part of life,” Guérin explains. “To simply enjoy the little things and the small talk, to sometimes face the burden and the grim fate of passing away, but more importantly to feel our connections, the mutual influences that are shaping us.”

Complete Article HERE!

‘I see the world through corpse-colored glasses,’ says popular mortician, author and YouTuber Caitlin Doughty

— Caitlin Doughty will be in Fargo to speak at Thursday’s Humanities North Dakota event, A Brave Conversation About Death.

Author and YouTuber Caitlin Doughty incorporates humor and history to discuss death and the funeral business.

By John Lamb

When she was eight years old, Caitlin Doughty saw a child fall to its death at a shopping mall and was immediately ushered away and encouraged not to talk or think about it.

“That was a pretty defining moment of my life. I was scared of death,” Doughty says. “We didn’t have the vocabulary for it, the safe area to hold fears. I just had to deal with it.”

Caitlin Doughty’s first book, “Smoke Gets in Your Eyes and Other Lessons from the Crematory”.

She may have not had the means to express her questions and concerns as an 8 year-old, but 30 years later she’s written three books and created a popular YouTube series all about death.

The mortician, author and YouTuber is the guest of Humanities North Dakota for a sold-out event Thursday night at the Avalon Event Center.

So what is, as the event is called, a “Brave Conversation About Death”? Doughty says she will come warm up the crowd, plant some food for thought on the topic, then leave the stage to let the audience talk among itself about death. She’ll then return to the stage and follow-up with a discussion.

“If you grew up in America, we don’t have death literacy, a safe way to talk about death. We were never taught how to do it,” she says, though she adds that over the last decade, things have gotten better.

“With the internet, people are not comfortable not knowing something,” she says.

In the mid-2000s she wanted to learn more about the funeral industry and got a job in a crematory then attended school for a mortuary science program and graduated as a certified mortician.

Her real work had just begun. Doughty saw things in the funeral industry that could be changed and started The Order of the Good Death, which advocates for reforming attitudes and practices around death, funerals and mourning.

In 2012 she started the YouTube series “Ask a Mortician,” which features her addressing questions people may have about death and funerals in an often entertaining way. The show quickly attracted a following among the general public and now has 1.96 million subscribers, thanks to episodes like “Morbid Minute: Coffins vs. Caskets” and “ Preparing Severely Decomposed Bodies for a Viewing”.

Between the YouTube videos and her books, “Smoke Gets in Your Eyes & Other Lessons from the Crematory,” “From Here to Eternity: Traveling the World to Find the Good Death” and “Will My Cat Eat My Eyeballs? Big Questions from Tiny Mortals About Death” Doughty has developed a following. She’s heard of people dressing like her for Halloween (“The hair is low hanging fruit,” she says, referring to her signature dark bangs) and even had a drag queen parody her in a video.

“I think I have such a specific advocacy that there’s not a cult of personality,” she says, adding that followers who share her stance on funeral reform are called “Deathlings”.

Still, the segments drew criticism from the old guard in the funeral industry.

“There was discomfort and anger that I’m doing it in this medium and talking about a different future for the industry,” Doughty says. “Most funeral directors believe that the way they provide for the families is the right way.”

But Doughty says changing some practices can help us have a better experience with death and mourning. In particular, she feels the family should have the option to be more involved, mostly by spending time with the deceased.

“For so long we’ve been trained to call the funeral home as soon as someone dies so they can take the body away,” Doughty says. “In reality, death is not an emergency. Your mom is dead now and will still be dead in two days. You’re allowed to take the time you need to process. Being present with a dead body is the simplest and scariest thing to do, but without fail people have an incredible experience.”

She adds that with the exception of an extremely rare case like someone dying of Ebola, “it’s perfectly safe to be around the dead.”

People may wonder what those in the funeral industry were like as kids and Doughty says she wasn’t so different from others her age, though she was a bit of a goth kid.

“A lot of funeral directors held funerals for their pets. That wasn’t me. I wasn’t morbid. I wasn’t Wednesday Adams,” she says. “I was always interested in death as a cultural thing. I see the world through corpse-colored glasses.”

So what does someone who spends all of their time talking about death have planned for her own funeral? While she’s made some plans, she’s still undecided about what will happen to her body. For years she’d wanted a simple, green, or natural burial, to be wrapped in a sheet and buried in a hole in the ground to allow for easier decomposition. After learning more about the practice of human composting, she’s becoming more interested in that.

“I definitely want people to spend time with my dead body in my own house,” she says. “Put flowers on my body, have something to eat or drink and just hang out with me.”

Complete Article HERE!

Respecting patient autonomy and the importance of hospice care

By Paul B. Hofmann, DrPH, MPH

A KevinMD article about Jimmy Carter’s end-of-life care decision, “The heartbreaking story of Jimmy Carter: a call for Medicare reform in end-of-life care,” indicated that the former president’s decision was heartbreaking. However, I have a different view. In my opinion, the 39th president, at age 98, made an autonomous and well-informed decision.

On February 18, The Carter Center announced in a statement that “after a series of short hospital stays, former U.S. President Jimmy Carter decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention. He has the full support of his family and his medical team.”

In the March 29, 1984 issue of USA Today, I stated that “often there is an obscure point in the continuum of intensive treatment when it is death, not life, that is being prolonged. We must remember that pneumonia, once described as the old man’s friend, has died. Thus it is even more important that patients be allowed to remain the beneficiaries of modern technology, not its victims.”

In the Spring 1994 issue of Stanford Medicine, I wrote that “with distressing frequency, we’re doing too little for patients and too much to them. Real caring often means choosing not to perform invasive diagnostic and therapeutic procedures that extend the dying process instead of improving life.” When a patient in the ICU or on a medical surgical unit is unlikely to survive to be discharged, studies have confirmed that a DNAR order, along with a focus on comfort measures emphasizing pain and symptom management, not only extends a patient’s remaining days but also improves the quality of his or her life during this period.

A column co-authored with internist Lawrence Schneiderman and former chair of the ethics committee at the University of California, San Diego Medical Center, published in the May/June 2007 issue of the Hastings Center Report, was titled “Physicians Should Not Always Pursue a Good ‘Clinical’ Outcome.” Although good clinical and patient outcomes are usually aligned, this is not always the case. Predictably, cardiologists are proud of helping the patient maintain a strong cardiac output, nephrologists want to make sure the patient’s kidney function is adequate, and pulmonologists properly concentrate on lung capacity and viability. However, if the patient has metastatic cancer with no likelihood of survival, timely referral for hospice services should be the priority. Under these circumstances, death should not be viewed as a medical failure. Conversely, causing or allowing a bad death represents an ethical failure.

An article co-authored with Douglas Van Houten, assistant chief nursing officer, Washington Hospital, Fremont, CA, appeared in the January/February 2014 issue of Health Progress. It was titled “When the ICU Is Not the Answer.” We identified ten recurring issues that characterized many cases when we conducted ethics rounds. For example, one such issue was “Staff members are concerned and uncomfortable when asked to provide treatment they feel is not in the patient’s best interest, and they experience moral distress in providing what they consider painful and inappropriate treatment.” Consequently, 12 guidelines were recommended based on preventive ethics to reduce the number and magnitude of issues potentially compromising patients, families, and staff members. The first guideline was “As early as possible after a patient’s ICU admission, assuming the patient is unable to express his or her preference (and has prepared no advance directive regarding such preferences and a designated surrogate), family members or friends should be asked for information about the patient’s values, goals, and any previously stated treatment preferences. Potential treatment goals are identified by the patient’s principal attending physician in light of this information, and expectations are clarified.”

Unfortunately, patients near the end-of-life are often referred for hospice services and palliative care belatedly. Instead of lamenting President Carter’s decision to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention, the author should have endorsed and applauded this decision.

Overall, it is important for health care providers to recognize the limitations of medical interventions and respect patients’ autonomy in making end-of-life decisions. As health care professionals, it is our duty to provide patients with all the information they need to make informed decisions and support them in their choices. Hospice care and palliative care can provide patients with a more comfortable and dignified end-of-life experience, and we should strive to ensure that these options are available to all patients who need them.

Complete Article HERE!