An Indonesian Tradition Of Digging Up Dead Relatives For A Spirited Afterlife Ritual

Men carefully remove a coffin from a intricately carved burial chamber cut into a massive boulder in the village of Pangala, Toraja district of Indonesia, South Sulawesi Province.

An ethnic community in Indonesia engages in a unique funerary ritual where the deceased are brought back to their families, some of them for a final smoke.

Photojournalist Garry Lotulung traveled to a mountainous region on the island of South Sulawesi, one of the more than 17,000 islands that form this archipelago, to capture the emotions that surround this ancient practice that a largely Christian community is still holding on to, and their perspective on life and death. This exclusive photo essay and video offers ReligionUnplugged.com readers a first hand glimpse of this unique religious and cultural ceremony.

Lotulung, who is a consultant photographer for the International Federation of Red Cross and Red Crescent Societies, has 10 photos to transport us to the archipelago’s Tana Toraja region, where the Ma’nene tradition, pronounced “ma-NAY-nay,” is practiced.

The word “Tana” in the region’s name means “land.” And the people of this region are called Toraja, pronounced as “to-RRAH-jah,” which means those who are from mountains.

(Warning: The following photos show human remains that may be disturbing to some viewers.)

Preserved bodies are placed in the Sun to dry, allowing for the old clothes that had wrapped the body to be removed before continuing with the Ma’nene ritual. Pangala Village, Toraja district.

The Ma’nene ritual involves exhuming the corpses of deceased family members periodically, cleaning and re-dressing them. Some even place cigarettes in their mouths before returning them to their graves. They also take the opportunity to clean their relatives’ crypts while the bodies are out. It is a ritual that happens every three or even five years in August.

Partly premised on the belief that death is not the end, the ritual is held every three to five years in August, depending on what a family decided after the death of a relative. Lotulung was there last summer, but his excitement about documenting this ritual, which might be “the only one in the world,” has not faded away.

Out of those 10 photos, the following is what Lotulung called his favorite, capturing a moment at a cemetery where a family is gathered, full of emotion as they are “reunited” with their loved one, changing clothes of their deceased relative with great respect and care.

Relatives lovingly place new clothes on the body of a deceased relative. Pangala Village, Toraja district.

According to a post on the site Authentic Indonesia:

The procession of the Ma’Nene ritual begins with family members coming to Patane (a building that has some room to store several bodies) to retrieve the bodies of their deceased family members. Patane is a family grave that looks like a house. Then, after the body is removed from the grave, the body is cleaned. The clothes worn by the bodies of the ancestors were replaced with new cloth or clothes. Usually this ritual is carried out simultaneously by one family or even one village, so that the event is quite long. After the new clothes were put on, then the body was wrapped and put back in Patane. The Ma’Nene procession was closed by gathering family members at the Tongkonan traditional house to worship together.

Lotulung said the community holds lavish funerals, based on their age-old belief that keeping one’s ancestors happy may result in a good rice harvest. The spirit of the dead is believed to linger in the world until the death ceremony is held, and afterward, the soul begins its journey to Puya, the land of spirits, as per local beliefs, he explained.

At times, bodies remain in homes for extended periods after death as families save for funerals, which in some cases can cost hundreds of thousands of dollars.

Relatives reverently place money in the coffin next to a mummified body. Pangala Village, Toraja district.

Torajans spend a lot of time and money on funerals and subsequent rites, believing that death is not the end and that not keeping ones ancestors happy may result in a poor rice harvest. It is also not unusual for bodies to remain in homes for long periods of time after death while families save for lavish funerals.

Fellow photographer Puta Sayoga wrote in The New York Times a few years ago:

For Torajans, death is a gradual and social process. The bodies of people who have recently died are kept at home and preserved by their families, sometimes for years, until the family has enough money to pay for a funeral. The spirit of the dead is believed to linger in the world before the death ceremony is held. Afterward, the soul will begin its journey to Puya, the land of the spirits. The longer the deceased person remains at home, the more the family can save for the funeral and the bigger and more expensive the ceremony can be. Elaborate funeral ceremonies can last for 12 days and include the sacrifices of dozens of buffalos and hundreds of pigs. Such ceremonies can cost as much as hundreds of thousands of dollars.

A report in The Guardian in Nigeria says that Toranjans believe the spirit of the person lingers and only finds peace in Puya, the land of the spirits, when a funeral ceremony has occurred. The practice dates back to a hunter named Pong Rumasek who was walking in the mountains and found a dead body in the Trojan mountains. The legend holds that the hunter cared for the body and dressed it with his own clothes — an act they believed brought him good fortune.

These views are certainly not compatible with Christianity, according to which death is a passage from physical life to eternal life in heaven or eternal separation from God in hell.

Even Islam – Indonesia is home to the world’s largest Muslim population – does not approve of what might be seen as ancestor worship. Muslims believe in the concept of qiyamah, or Judgment, that the soul will be judged by Allah according to one’s deeds and actions in life.

Family members surround the preserved body of a relative placed in the Sun to dry. Pangala Village, Toraja district.

“Today, Torajans are largely Christian, but their age-old funeral practices — which predate their conversion to Christianity — persist,” Sayoga writes in the Times. “Ma’nene’, for example, which is carried out three years (or more, depending on the family’s agreement), is meant to be a way to honor deceased relative. According to the belief, performing the rite will result in a better harvest in the following year.”

For Toraja Christians, both Protestant and Catholic, the retention of the ritual can be mostly about preserving an important part of their culture.

However, critics argue that the Ma’nene ritual is a form of cultural appropriation, as it is being commercialized and used as a tourist attraction, apart from involving animal sacrifice. They argue that the ritual has lost its sacred meaning and has become a way for the Toraja people to make money.

An elderly man poses for a photo with the bodies of his brothers and sisters. Pangala Village, Toraja district.

However, Lotulung disagrees with such criticism, responding to the complexity of the practice with empathy.

“I have a deep empathy for the Toraja people, as they still provide a proper place and show respect to their ancestors,” said Lotulung, whose work focuses on documenting social issues and environmental crises in Indonesia.

Every family buries their loved ones with as much honor as possible, and sometimes in ways that only they can fully understand, he argued.

A woman covers the body of her sister with new clothes. Pangala Village, Toraja district.

Lotulung could also connect and relate with the Toraja people. He said he couldn’t help but feel emotional while making these photos.

When the photojournalist saw a family pull a body out of a casket, he was “silent for a moment,” wondering whether anyone would ever get a chance to see or meet family members after their death.

“I felt emotional being around the graves. In that atmosphere, I could sense the sadness that follows the loss of a loved one,” he said. “For example, I saw a young woman standing in front of a cemetery and looking at a picture of her deceased mother with tears in her eyes.”

As a photojournalist, Lotulung said he was careful about giving space to grieving families during the shoot. They appeared to be unaware of the fact that they were occasionally the object of tourists’ attention, he said.

He added that he witnessed a grandson who finally got to hug his grandfather’s body after changing his clothes. Amazed by what he saw, Lotulung thought, “Death helps us understand the reality of life.”

Family members carefully clean a mummified body before dressing it in new clothes. Pangala Village, Toraja district.

Lotulung stated that during his time in Toraja, he never received any information from the villagers about any call for a ban on the practice. He believes the Toraja people do not need attention from international media or tourists, and that they do this sincerely out of respect for their ancestors.

A man holds a traditional lamp inside a cave used as a tomb. Sandan Uai Village, Toraja district. Toraja district.

He also thinks this ritual will continue for much longer as it has been passed down from generation to generation and is deeply ingrained in their culture.

While tourists from Western countries may provide an impetus for such “unique” customs to carry on, members of the community will continue to cling to these rituals to show their respect for their ancestors, and also for fear of drawing their wrath, Lotulung concluded.

Complete Article ↪HERE↩!

February 13, 2023February 13, 2023

When There’s No Word Like ‘Widow’

— After my sister died, I yearned for a word like “orphan” to name my new identity.

By Kyleigh Leddy

The first time I lied about my sister, I was sitting in a semicircle in my high school homeroom study hall. Our teacher asked us to describe one of our siblings as a class bonding exercise. Numb with grief, I almost laughed at the cruel timing.

I was 17 and my sister, Kait, had been missing, presumed deceased, for only a few days.

One by one, my classmates shared anecdotes about their brothers and sisters. When it came to my turn, I panicked and said, “I’m an only child.” The words tasted sour in my mouth.

On Jan. 8, 2014, security cameras captured footage of my sister walking to the peak of Philadelphia’s Benjamin Franklin Bridge and not returning. She was 22 years old and had been struggling with her mental health and the effects of a traumatic brain injury for several years.

It might have been easy to deduce what had happened, but grief defies reason. My family never found Kait’s body. It took us years to accept that she had taken her life, and even longer to put the experience into words.

In the months after my sister’s suicide, every time someone casually asked me if I had siblings — on first dates; during college admission interviews; in the grocery store in the middle of an otherwise average day — I would wince. It was such an innocuous question for some, but so loaded for me. It made my chest ache each time.

Later, in college, where no one knew me or what had happened, I found it easier to lie about being an only child than to communicate the clunky but simple truth: I once had a sister but now I don’t.

In those early weeks of college orientation, full of repetitive conversations about our hometowns and prospective majors, I remember feeling surprised, guilty and sometimes even angry when people believed me. How could they not see all the ways my sister has shaped me?

I think of her when I do my makeup in the morning. I use her unique turns of phrase. I imagine her advice before I make a major decision. I don’t do this consciously. I do it because I was born a sister. When I entered the world, Kait was already in it. There is no version of me that exists without her imprint. And the qualities I like most about myself — my sense of humor, my desire for adventure — are hand-me-downs from her.

I wished there was a word to identify myself in relation to my loss. I longed for a label that would be instantly understood by others, one that would communicate both Kait’s presence and absence in my life. I wanted a word like orphan or widow — a term that says, “I once had a sibling, but I lost her.”

“There are no words,” was a phrase I heard often when I was grieving, and on some level, it is true. Death is mute. Loss steals our language. There aren’t sufficient words to convey what it feels like to lose someone you love — and even fewer to comfort those of us who know the feeling too well.

But does the inadequacy of language in the face of death mean we should silence ourselves? Grief is isolating enough. Shouldn’t we try to name what we can?

Some people may bristle at the titles of orphan, widow and widower, as they each come with their own stereotypes and limitations. But, after losing my sister, I yearned for a similar title to locate and lend legibility to my experience.

If I had a word to describe myself, perhaps I would have been more likely to mention my sister to my college classmates, rather than entirely omitting her existence. If I had a word to describe myself, perhaps I would have been more likely to meet and connect with other people who struggle to speak when asked if they have any brothers or sisters.

At the very least, I wanted a term that could serve as a metaphorical stop sign in conversation: a warning to tread carefully, a succinct and sufficient answer in its own right.

But I didn’t have that word. So I resorted to lying until, only a few weeks into college, I was caught.

A group of us were sitting on a friend’s dorm bed when a boy confronted me. I was telling a story about my sister’s brief flirtation with a famous actor.

I was bragging like a little sister, but I had previously told everyone that I wasn’t a little sister. The boy pointed out the discrepancy. “Who lies about something like that?” he asked.

As everyone turned to look at me, my cheeks burned and my heart caught in my throat. My voice wavered, but I didn’t cry. For the first time in a public setting of more than one or two people, I answered the question honestly.

That was seven years ago. Back then, there was more urgency and confusion for me about how to approach my loss. Now there is some clarity. The more I’ve written and talked about my sister’s life publicly, the more confident I feel in telling the hard, full truth.

If someone asks me if I have siblings now, I tell them that I have a sister who passed away. I tell them that Kaitlyn was rebellious, smart, beautiful, outrageously funny and sometimes outrageously defiant too. If they ask further questions, I tell them what she went through and how she died.

And yet, I still wonder if I and others whose siblings have died would benefit from having a word that names our pain — especially in the early days of mourning when telling the complete story may feel impossible.

For now, there is a word for longing, and there is a word for grief, but there are no words to describe how it feels to pull your phone out to text your sister and know that she won’t answer. There is no term for being the remaining half of a shared tradition, no label that captures a relationship that ends, but also doesn’t, like a phantom limb that still aches when it rains.

Hopefully, someday, someone will find or create an adequate term for people like me. But in the meantime, what I am, and what I will always be, is a little sister.

Complete Article ↪HERE↩!

February 12, 2023February 11, 2023

‘The Good Death’: Communications Expert Approaches End-of-Life Discussions With Humor

— Communications Expert Approaches End-of-Life Discussions With Humor

Sitting neatly on Christian Seiter’s desk is a pair of salt and pepper shakers shaped like gravestones, each one with its own inscription: “Here lies salt” and “Here lies pepper.”

Surrounded by death-inspired trinkets and memorabilia, the assistant professor of human communications at Cal State Fullerton calls himself a “death positive scholar” interested in studying end-of-life communication. His research analyzes how different emotions — such as worry and humor — impact people’s willingness to confront their mortality.

By understanding the power of these communication strategies, Seiter’s goal is to encourage people to talk about death and help them work toward what he calls “the good death.”

“Death comes for us all, as harrowing as that can be. Pretending that it’s not going to happen isn’t going to help anybody. In fact, failing to prepare could make the worst day of your loved one’s life unnecessarily worse,” said Seiter. “When time is running short, the gifts that we give are almost all communication-based — things like communicating clearly about what wishes you would want.”

Using Humor to Face Mortality

According to Seiter, planning for a person’s death includes three main steps: reflecting on one’s values and beliefs about the end-of-life, sharing those wishes with loved ones through conversation and formalizing those wishes with documentation, such as advance directives.

Advance care directives include living wills which outline a person’s decisions for medical treatment if they are no longer able to express informed consent, and designating a health care proxy to make medical decisions if a person is unable.

For many, especially young and healthy people, these steps can seem unnecessary or premature, but Seiter said that preparing for the end of someone’s life is similar to packing a spare tire before a long road trip. It’s better to have it and not need it than need it and not have it.

“It’s pretty easy to convince someone who is elderly or someone who’s very ill that this is relevant, but it’s a lot harder to convince college students that they’re not immortal,” he said.

Since the onset of the COVID-19 pandemic, Seiter said that death anxiety has significantly increased. He explained that the constant reminder of death has deterred people from seeking information about end-of-life care.

In a study he conducted in 2020, Seiter found that worry can be used as a mechanism to influence people to take an active role in planning for the end of their life, but in response to the pandemic and high levels of demotivation, he’s interested in another approach to discussing death — humor.

“Humor has the ability to make conversations about death more accessible for everybody,” said Seiter.

Christian Seiter, assistant professor of human communications

This semester, he is working on a research project that evaluates how different levels of humor in a podcast impact listeners’ ability to talk about death and seek out end-of-life precautions. In three podcasts, the speakers talk about advance care planning, but aside from a control episode, one episode adds humor and the third includes humor with profanity.

He is still analyzing the data, but historically, profanity in the death positive movement has been a popular method of encouraging young people to engage with such topics as last wishes and advance care.

Despite Seiter’s best intentions, he knows that there are a lot of reasons why people postpone thinking about their death. For some people, it’s fear that talking about it will invite death into their lives.

No matter the reason, Seiter said it’s important to think about the bigger picture and the additional heartbreak that loved ones could be spared if these conversations occur before it’s too late.

“I’m always amazed by the stories that I hear of people talking about how some of the best days of their lives were some of the last days of their lives because they don’t have to worry about the next steps. Everything is already in place, and they can focus on saying goodbye and leaving with peace,” said Seiter. “Clarity is maybe the greatest gift you could give your loved ones.”

Not everyone is as fascinated with death as Seiter, but there are ways that they can begin to have these conversations in informal and low-risk settings. He said that the first step is to start thinking about one’s mortality and deciding who they would trust to act on their behalf. After discussing those answers with loved ones, people can fill out an advance care directive online without the help of a lawyer.

“I think it’s important for us to step into places of constructive discomfort,” he said. “I’m a big proponent of approaching it with healthy curiosity. If you are curious about it, don’t stifle that. Don’t let societal taboos or myths stop you, and don’t judge yourself for being curious.”

Becoming Death Positive

Seiter found his niche in end-of-life communication as an actor studying medical humanities and bioethics at the University of Rochester School of Medicine and Dentistry. His original goal was to design a theater-based workshop that taught participants clinical empathy. During his program, his adviser sent him to the palliative care unit, and the experience altered his perception of death permanently.

“When I stepped into the very first patient room, I almost fainted and I had to excuse myself. It’s not something that came easily,” said Seiter. “After I composed myself and received a pep talk from my mentor, I reframed the experience and was able to have some of the most meaningful weeks of my life. That’s where I fell in love with the idea of ‘the good death.’”

From that moment on, he shifted his interest away from theater and began his career in academia, conducting research and engaging students with this topic of death.

He brings his expertise into the classroom at CSUF, teaching classes on health communication, processes of social influence and persuasion as well as interpersonal communication and research methods.

“Many people don’t want to admit that we are all a little curious about this, and yet, you would never know because nobody wants to talk about it,” said Seiter. “Especially with COVID-19, we’ve all been living with death very intimately for several years and giving people an avenue to talk about it is a really valuable thing.”

Complete Article ↪HERE↩!

February 11, 2023February 11, 2023

Death by Poverty

— Canada’s Assisted Dying Program Exposes Fault Lines in Healthcare

Changes to Canada’s assisted dying program have garnered international controversy. New amendments extend access to assisted death to those with non-fatal conditions. These changes have resulted in dozens of patients applying to escape not illness, but poverty.

By Matthew Walters

Canada’s assisted dying program, known as MAiD (Medical Assistance in Dying), has become an object of international attention in the past few months. Last fall, dozens of stories came out about patients who applied for MAiD not because of sickness, but because of poverty. Disability activists have warned for years about the dangers of making death accessible while social services remain inaccessible. They were largely ignored. But now, this criticism is finding an echo among healthcare professionals and activists, as well as within the broader population.

The MAiD program was enacted in 2016 when the Supreme Court of Canada ruled that it was unconstitutional to deny assisted suicide to persons with a foreseeable cause of death. This measure was welcomed by a large majority of Canadians, who saw it as giving greater autonomy to people facing the end of life and allowing for a compassionate option. But in 2021, the bill was controversially amended to drop several safeguards on access to MAiD, allowing for those whose deaths are “not naturally foreseeable,” qualifying everyone with “a serious illness, disease, or disability” to access MAiD with a separate set of requirements.

Canada’s image in the U.S., particularly among liberals, is of a country that is like America but with something like a welfare state. Unfortunately, this image is sharply divorced from the reality: social reforms earned in the past have been clawed back and gutted through decades of economic crisis combined with austerity, privatizations, and counter-reforms from neoliberal governments. Canada ranks lower on spending and service than most OECD countries and scores even lower than the U.S. on social spending. This austerity inevitably impacts the marginalized the most, One of the groups most victimized by austerity and privatization has been the disabled population.

Conditions for the disabled population in Canada are nightmarish: over 40 percent of disabled people live below the poverty line, and there is no province in Canada where disability pays above it. In the most populous province of the country, Ontario, disability is $1,228 CAD per month, while rent in Toronto averages at $2,500 CAD per month. Disabled people are also overwhelmingly represented in unemployment statistics, with 36 percent of those with a “long term condition or disability” reporting unemployment in the immediate aftermath of the pandemic. Disabled people were even cruelly denied from accessing the CERB program, which paid $2,000 a month — nearly twice what disabled people earn on assistance programs. As author Nora Loreto wrote:

Over the course of the pandemic, expanded MAiD was the most significant change in federal healthcare policy. There have been no permanent significant social supports established for disabled people, guaranteed income projects, financial supports or rent controls, or creation of new financing programs for assistive devices. Instead, the government has said: We will make it easier for you to choose to die, but we won’t give you what you need to have a fulfilling life.

Many stories have come out about people seeking MAiD who would have continued living if not for the circumstances poverty had created in their lives. A woman in Winnipeg received assisted suicide because, as her conditioned worsened, she could not afford the increasing costs of at-home care and the public system was no longer able to support her needs. She wrote to her loved ones in her obituary, “Ultimately it was not a genetic disease that took me out, it was a system.” Two women in Ontario, both with Multiple Chemical Sensitivities (MCS), a condition in which one or several common chemicals create a severe, debilitating reaction, applied for MAiD after both fighting and failing to find accessible housing. One woman, Denise, said to the media that she applied to MAiD “because of abject poverty” while living on disability payments as well as her inability to gain accessible housing after seven years of applying. The other woman, Sophia, said in a video eight days before receiving MAiD that “the government sees me as expendable trash, a complainer, useless and a pain in the ass” after two years of attempting to access smoke- and chemical-free housing.

MCS as a condition is largely manageable; both women said that when they were not exposed to the triggering chemicals in their daily lives, they could function and live happy, healthy lives. They also would likely not have applied to MAiD if not for poverty and lack of access to the support systems they need. Rather than increasing the freedom and dignity of patients, MAiD has exposed the deep fault lines within Canadian social infrastructure. The system in place for these vulnerable patients is so inaccessible and underfunded that death becomes the preferable — and easier — choice. Effectively, MAiD has replaced access to public systems for the most “burdensome” patients. Critics say that the ambiguity and permissiveness of MAiD laws are encouraging this situation. Trudo Lemmens, a professor of health law and policy at the University of Toronto, argues that Canada’s laws have become the “most permissive in the world:”

In the context of medical assistance in dying, we’re getting rid of this idea that we will first try the least interventionist measures. There is no jurisdiction in the world other than Canada that frames this as just a medical intervention.

This framework has led to several disturbing cases, such as Roger Foley, a man with Degenerative Brain Disorder who was hospitalized in London, Ontario. He became so alarmed at how frequently he was being asked about euthanasia, he began recording the conversations. In one of these conversations, the hospital’s director of ethics mentioned while “discussing” MAiD with him that continuing his care to live would cost the hospital “north of $1,500 a day.” Defenders of MAiD will defend that the lack of regulations give autonomy to patients when, in reality, they only offer the choice of death while accepting that the choice to live is denied. As Lemmens stated in the same interview, “We’re basically sending the message that persons with disabilities who are not dying have an understandable reason to end their life. And this is discriminatory.”

In a concession to rapidly growing pressure from psychiatric and medical experts, the Canadian federal government delayed the expansion of MAiD to include those suffering from psychiatric illnesses until 2024. While it is a good thing that disability activists and experts were listened to, there is no amount of legal or ethical tinkering with legislation that can do away with the systemic discrimination against disabled and poor people built into the capitalist system. As the current crisis of social services across the whole of North America shows, without the proper resources needed to function, having a “right” to healthcare or welfare is just words on paper: the extra costs needed to accommodate the sick, poor, disabled, and marginalized groups through social spending are expendable. When a crisis hits and profits are threatened, these are the first costs to be cut. It is easier — and cheaper — for the capitalists to administer the right to death, framing it as “dignified dying” and “compassionate,” than providing funding for the right to live.

As socialists, we are not opposed to assisted suicide, which in the majority of cases is a dignified alternative to prolonged suffering. But as long as disabled people are denied the means to a dignified life where their needs are met by society, assisted suicide programs will inevitably be coercive and discriminatory. The only way to ensure that the right to death does not come at the expense of the right to life is through a universal, accessible, fully-funded healthcare system under the democratic control of the working class and inclusive of everything from disability to psychiatric illness. But the crisis of the capitalist system has shown the inability of this system to provide for the needs of society, pushing these services to the brink of destruction — it is only through the socialist reconstruction of society that the resources of the whole economy can be mobilized to meet the needs of all, rather than the private riches of a few wealthy capitalists.

Complete Article ↪HERE↩!

February 10, 2023February 9, 2023

Quebec organ donors increase threefold after ‘steep rise’ in donations from MAID patients

— The proportion of donors who chose MAiD increased by nearly 15 per cent last year, according to Transplant Québec.

By La Presse Canadienne

Quebec saw a record number of referrals for organ donations in 2022, including a significant increase in donations made in the context of “medical aid in dying” (MAiD) cases, according to the latest annual report from Transplant Québec.

The organization announced Wednesday that the proportion of donors who chose MAiD increased by nearly 15 per cent last year. Most of the cases involved patients who had a neurological or neurodegenerative disease.

Transplant Québec noted that the number of donations made in the context of MAiD has tripled over the past five years. About 10 per cent of cases of MAiD in Quebec represent potential donors, a proportion based on diagnoses compatible with organ donations, which translates to the equivalent of 366 donors.

“This is not only an opportunity to increase the number of organ donors in Quebec, but also an incredible opportunity to see more people benefit from a transplant,” Transplant Québec director Martine Bouchard said in a statement. “In addition to increasing the number of transplant recipients through the generosity of their gesture, these (donors) also gave meaning to their condition by allowing other lives to be saved.”

In total, Transplant Québec received 854 organ donation referrals in 2022 and 483 people received organ transplants. The organization noted that 78 lung transplants were carried, an “unmatched” number, for the second consecutive year.

More than 170 donors in Quebec allowed 584 transplants to be carried out.

The waiting times for lung or kidney transplants has shortened considerably over the past 10 years, according to the report. As of Dec. 31, 2022, 913 people were on Transplant Québec’s waiting list.

In proportion to their population, Montreal, Saguenay—Lac-St-Jean and the Eastern Townships are the regions with the highest number of potential donors, according to Transplant Québec.

Complete Article ↪HERE↩!

February 9, 2023February 9, 2023

My husband wanted assisted dying, but was denied.

— It’s only right people should have the option

By Patrick Kelleher

In September 2019, Alain du Chemin was diagnosed with a brain tumour.

At the time, he was living with his partner of eight years, Paul Gazzard. The pair had met on Grindr in 2011 – Paul was such a novice to the app that he couldn’t get his profile picture the right way up, and Alain sent him a cheeky message saying he had neck ache from trying to look at his upside-down face.

“For some bizarre reason I thought it was hilarious, and we just got chatting, met up, and then the rest is history. Very quickly I moved in with him,” Paul recalls.

Their life together was a happy one, but after months of suffering with headaches and disorientation, Alain was told he had a tumour, and that it was terminal.

Paul (L) and Alain (R). They are sitting outdoors on a bench and both men are laughing. — Paul (L) and Alain (R).

He was a pragmatic person, Paul says, and immediately started researching his options.

“As he was reading more and more about what the end game might be, he discovered a lot of things – that people with brain tumours, towards the end, may not have all their faculties, can’t speak properly, can’t do a lot for themselves, become really confused, and so on. And he decided at that point that wasn’t really something he wanted to go through.

“That’s when he started looking into the whole assisted dying process and what it entails.”

Assisted dying describes the act of a terminally ill person being prescribed drugs, at their request, that end their life. A UK parliamentary briefing uses the term to cover instances where the patient self-administers the drugs, and where healthcare professionals administer them on request.

By that time, Alain was living back in Jersey, where he was from originally. The problem was that assisted dying was illegal there, as is the case in most European countries.

One of the few places where assisted dying is possible is Switzerland. Many people from across the world flock to the country so they can die on their own terms.

Paul and Alain on a plane on their wedding day. Both men are wearing tuxedos and the plane has been decorated. — Paul and Alain on a plane on their wedding day.

It took a while for Paul to realise just how serious Alain was about dying in Switzerland.

“He started saying, ‘I want it to be a celebration, I’d like to have certain close friends go with me, we’ll have a great party before I go off’. It was quite a lot to take in.

“Previously I had no view on assisted dying at all. I mean, thinking about it, why would you unless you or someone you loved were in that situation?

“You could tell he was absolutely adamant this was what he wanted to do… I think what I struggled most with was timing, really. When do you know now is the right time to go?”

‘Laws must change to a more humane model’

In order to undergo assisted dying, you must be considered competent to make that decision at the time of death. That presents specific challenges for people with terminal illnesses like brain tumours – for Alain, it meant he would have to die when he was still relatively healthy.

“He was fully supported by me, close friends, his family – we knew the sort of person he was and if he had something in his head, it was going to happen.”

While Alain explored his options, he and Paul worked on making the most of their time together. On Valentine’s Day 2021, they got married with around 20 guests in attendance.

Paul and Alain on their wedding day. they are pictured signing the marriage register in a registry office. — Paul and Alain on their wedding day.

Shortly afterwards, Alain’s condition started to deteriorate rapidly.

“At that time, I think he was feeling things were changing quite a bit, and the planning really had to be kicked up a bit,” says Paul.

“We have a friend who’s a pilot and he was able to get a private plane to take us to Switzerland, which was pretty much one of the only ways during that time [at the height of the COVID-19 pandemic] that we were going to be able to get there.”

The cost of hiring a private plane was going to be tens of thousands of pounds – and it caused “an enormous amount of stress”.

In the face of all those pressures, they ran out of time. Alain reached the point where he would no longer be considered competent enough to choose to undergo assisted dying.

On 1 May, 2021, Alain passed away in a hospice after a period of rapid deterioration.

Alain never had the chance to go through assisted dying – but Paul says he might have if the law was more humane.

Paul and Alain on their wedding day. They are both wearing suits and are standing on a red carpet outside a private jet. — Paul and Alain on their wedding day.

That’s why Paul is now a campaigner for better assisted dying laws. He’s working with Dignity in Dying, a campaign group that believes everybody should have the right to a good death.

YouGov polling shows there’s broad support in the UK for a change in the law. Three out of four people believe terminally ill adults should be allowed to choose when their lives draw to a close.

“It’s about choice,” Paul says.

“I think it’s only right people should have the option available to them.”

Complete Article ↪HERE↩!

February 8, 2023February 8, 2023

Giving the gift of a ‘good death’

By Megan Crotty

It was a normal workday at Patty Burgess’ cosmetic surgery consulting business, then the phone rang.

It was a call for her coworker, Rona, from her doctor that made her visibly upset. The doctor had test results for Rona but would not give them to her over the phone, so Burgess said, “We’re going,” and the two drove to the doctor’s office.

The tests revealed stage 4 lung cancer.

“It was shocking, and it just changed everything on a dime,” said Burgess, who became Rona’s caregiver at the end of her life. “She was a dear friend. She helped introduce me to hospice, and I learned what an unbelievable, valuable benefit it was. The next thing you know, my whole life had changed.”

Serving a need

After being a volunteer, trainer and community educator for hospice, Burgess saw the need for better training of hospice volunteers and caregivers. Fast-forward 20 years, and Burgess is a national trainer, speaker and educator in end-of-life matters, and she has trained more than 15,000 volunteers, staff, end-of-life doulas, caregivers and students thanks to her company, Teaching Transitions.

The course, “Certified End-of-Life Specialist and Hospice Volunteer Designation,” is being offered at North Carolina’s Randolph Community College starting next month.

“People plan more for buying a car or going on vacation than they do for their own death,” Burgess said. “One of the things that our course seeks to do is try to help transform the experience of dying, grief and loss from one of only fear or sadness or being overwhelmed into peace, connection, meaning and even a little bit of awe. That’s a good death.”

She continued: “Lots of times the patient is ready, but the family is not. Sometimes, getting the family to come to terms with, and to understand the sacred passage — and all the connection and time and all the beauty that can really be had — can make a huge difference in the death of their loved one.

“I’m not necessarily wrapping death up with a big red bow because sometimes it can be pretty messy, but it’s usually messier when people don’t know what to expect; they’re fearful, and they’re overwhelmed. But if they know what to expect and understand that this is a normal, natural part of life and if we’re seeking a good death, it’s much more likely when people know what’s coming.”

Course details

Burgess said the immersive, self-paced, online course teaches students to cultivate a high level of compassion and empathy, and to eliminate factors that may obstruct the delivery of high-quality care and companionship to whomever they serve.

The course features 10 modules:

Welcome, Overview and Purpose of the Course
Hospice 101: Introduction to Hospice Philosophy, Benefits, Eligibility, & Team Approach to Care
Personal Death Awareness, Exploring Beliefs and Fears, Advance Directives
End of Life Communication: Speaking and Listening Differently
Clinical Care at End of Life: Signs & Symptoms of Approaching Death, Universal Precautions, Pain & Symptom Management, Safety in the Home, Actions When Death Occurs in Various Settings
Spiritual and Cultural Diversity and Inclusion in the Dying and Death Experience
Loss, Grief and Bereavement: Understanding, Coping and Healing: Supporting Others through Grief
Self Care & Resilience: Managing Personal Stress and Avoiding Burnout
Legacy: Last Words, Eulogies and a “Dialogue with Death
Putting it All Together: Volunteer Roles, Visit Etiquette, Ethics and Needs of the Dying

The course also meets and exceeds the Medicare regulations for hospices, and the training recommendations by the National Hospice and Palliative Care Organization (NHPCO). It is appropriate for personal or professional caregivers or healthcare staff wishing to enhance skills and credentials.
It is also valuable for various roles and disciplines (as either entry-level training or continuing education), such as nurses, grief counselors and more clergy.

“There are lots of times when we have nurses in the program who have worked in oncology and spent their time trying to keep people alive,” Burgess said. “They never really dealt with death. Initially, this course was designed for hospice volunteers, but it’s for the layperson, students looking to enhance their professional credentials… We’re all going to become a caregiver to someone.”

Burgess was one of seven original founders of the National End-of-Life Doula Alliance (NEDA) in 2018. Today, NEDA has welcomed more than 1,300 members since its formation and continues to grow as this healthcare segment gains popularity and utilization.

Complete Article ↪HERE↩!