Black Christian patients are less likely to receive their preferred end-of-life care.

— Researchers hope change that. 

by

Researchers from the University of Alabama at Birmingham published a paper in the Journal of Racial and Ethnic Health Disparities demonstrating the importance of respecting the deeply held beliefs of African American Christians to help provide equitable, goal-concordant end-of-life care to these patients.

There are two schools of thought among clinicians at end of life: aggressive care, which focuses on treating the illness or condition, and supportive care, which focuses on pain and symptom management.

In this publication, researchers demonstrated how the term aggressive care — used loosely by clinicians to describe care that can negatively impact quality of life for patients with serious illness — is often used to inappropriately label the preferences of African American patients.

“Our motivation through this article was to bring in not only the perspectives of African American Christians, but also to share the biblical and historical backdrop that can be instrumental in shaping their serious illness and end-of-life wishes,” said Shena Gazaway, Ph.D., assistant professor in the UAB School of Nursing and lead author of the study. “In collaboration with our wonderful medical colleagues, we wanted to acknowledge the origins of aggression and discuss how the labeling of care as aggressive with patients and their families can negatively impact care conversations.”

For patients with serious illness such as advanced cancer, dementia and terminal illnesses, the term aggressive care is used to describe courses of treatment that could potentially cause increased physical distress and psychological stress and a decreased likelihood of experiencing a “good death.” The Institute of Medicine defines a good death as “one that is free from avoidable death and suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes.”

“The data is clear — a larger proportion of African American families reported that their loved one did not receive care that is in accord with what they requested in the final days of their life,” said Ronit Elk, Ph.D., associate director for the UAB Center for Palliative and Supportive Care, and professor in the UAB Division of Geriatrics, Gerontology and Palliative Care and co-author. “We hope this article provides a careful explanation of why these values are so important to the African American Christian community and will strike a chord in many clinicians about the importance of respecting these values and not dismissing the beliefs that these patients and their families about hope and the miracles of God.”

In this article, researchers discuss how many Black Christian adults share a belief in miracles that shapes their end-of-life care decisions. The article states that this belief in miracles combined with an overall distrust in the health care system — due to a history of medical experimentation and centuries of health care disparities — have led many African Americans to depend on their belief in God’s healing power to perform miracles and heal family members who are seriously ill.

The UAB Center for Palliative and Supportive Care offers the African American Communities Speak program to clinicians. This skills-based training incorporates videos created by the African American community to train clinicians on the community’s cultural values, lived experiences and recommendations for care. Self-reflection and active learning techniques provide participants the foundation needed for changed behavior and improved communication with patients and caregivers.

This trust in God, belief in miracles and distrust of clinicians may lead to a seriously ill African American Christian patient to request life-sustaining medical interventions even when recommendations call for supportive care. When facing terminal illness, this hope in miracles often influences the patient’s medical decisions and fuels a desire for life-sustaining interventions. The paper states that these decisions are also rooted in a belief that God ultimately decides the outcome of life, not the health care system. 

Researchers say the key to goal-concordant care is for clinicians to allow these patients to process clinical information through their preferred spiritual lens and to allow them time to have critical conversations with those in their network.

“We are hopeful that clinicians will read this article and take away the importance of religious and cultural belief systems in this particular patient population,” said Moneka Thompson, staff chaplain in the Department of Pastoral Care and co-author. “Specifically, we want everyone to understand how the values and beliefs of this particular population may impact their end-of-life preferences and decision-making. This article is the combined effort of five very different women from quite different backgrounds.  Our collective goal was to create a think-piece towards movement of health care for this population in a meaningful and more equitable direction. At the end of the day, we want to support health care equity as much as possible.”

Thompson says that there are a few steps clinicians can take to help ensure they are providing goal-concordant care to their patients.

“First, we encourage clinicians to be aware of their own biases towards this patient population that may fuel incongruent care,” Thompson said. “Second, we hope that clinicians will utilize communication practices that encourage cultural sensitivity, humility and curiosity. Finally, we want clinicians to be fully present to the variety of religious and cultural beliefs that this population will present without feeling the need to obtain this value system for themselves or compromise their own.”

Complete Article HERE!

Deadnaming, misgendering and more

— Chicago’s trans and nonbinary community grapples with end-of-life complexities

Elias Renaud, seen outside St. James Cathedral in Chicago on Nov. 12, is a transgender male and has drawn up a living will.

By Adriana Pérez

When COVID-19 first hit Chicago in 2020, essential worker Elias Renaud texted his sister and a good friend from the bus on his way home from his job at a grocery store.

“If something happens to me, this is where I want things to go, this is what I want done,” Renaud, who uses the pronouns he/him, remembers telling them.

The 44-year-old transgender man, from Edgewater, drew up a living will with the cautious hope that when he dies, his body would be treated with dignity.

“I think by the time I die, there will be a lot of people doing death work that will have had experience with trans bodies or will be trans people themselves, or nonbinary people themselves,” he said.

For trans people like Renaud, as well as for nonbinary people, life comes with its own set of difficulties. But so does death.

Elias Renaud, a transgender male from Chicago's Edgewater neighborhood, has drawn up a living will.
Elias Renaud, a transgender male from Chicago’s Edgewater neighborhood, has drawn up a living will.

As the death care industry grapples with changing cultural attitudes and questions on how to respectfully lay to rest those who identify as trans or nonbinary, a South Side-based LGBTQ community center called the Brave Space Alliance is set to launch the final portion of its Dignity Project this month, completing an umbrella of services that aim “mainly for violence prevention, and to perpetuate dignity in our communities,” said interim CEO Jae Rice, whose pronouns are he/they.

The project includes $400 microgrants for trans people in Chicagoland, a name change clinic and a funeral fund that will give up to $6,000 to cover funeral and burial costs for trans people. The funeral fund is the first of its kind in the country, they say. And beginning this month, Rice said, the Dignity Project will be providing living wills for trans folks in the area as well.

“So at the time of their death, they will have something that’s on record to show how they want to be buried, how they want to be presented, what they want to be buried in, their name that they want to be called — all that stuff,” Rice said.

Multiple conversations with experts unearthed how end-of-life issues become more pronounced for trans and nonbinary people, including deadnaming, misgendering, gendered death care and legal documentation, and how they play out in various institutional settings: funeral homes, the medical examiner’s office, the media and more.

“Deadnaming refers to when you refer to a trans or a nonbinary person by a name that they no longer go by. Often this is their birth name, or it may be their legal name. And this happens either on purpose or accidentally — intention sometimes doesn’t matter,” said Aster Gilbert, manager of training and the public education institute at Center on Halsted, a community center that advocates for LGBTQ health and well-being.

Misgendering similarly refers to when a person is referred to as a gender that they do not identify as. A trans or nonbinary person’s lived name and gender might not match their legal name and gender markers because of what constitute expensive and time-consuming legal transitions, and the anxiety and emotional distress that publishing one’s name under a newspaper of record may cause.

“If there’s a person who was found (dead) and you only have their legal documentation, that may not reflect who that individual actually is, because we’re all required to have legal state and federal documentation that may not have anything to do with our lived realities,” said Gilbert, whose pronouns are she/they.

In a statement to the Tribune, the Cook County medical examiner’s office said the office “treats every decedent in our care with dignity and respect. The loss of a loved one is tragic in itself. When a transgender person dies without having updated official records, their loved ones can face additional challenges that make the loss even more painful.”

That being said, the medical examiner’s office follows the direction of the Illinois Department of Public Health. “The decedent’s gender is reported on their death record or death certificate as the person was officially recorded while alive,” the statement continued. “So, if she was recorded, for example, as female on official documents (i.e. birth record, driver’s license) then that is how she must be recorded at death … We are very sensitive to the concerns of transgender persons and their loved ones, and do our best to respect their wishes to the extent that the law allows us to do so.”

In 2021, the Illinois Vital Records Division of the state health department added a new option to its system: an “X” gender marker in death certificates, which prints as nonbinary.

But though the gender markers in passports and Illinois birth certificates also allow people to choose a gender-neutral option, according to Illinois Legal Aid Online, that is not yet the case with driver’s licenses. Although Gov. J.B. Pritzker approved a measure in 2019 to include nonbinary gender markers on driver’s licenses and state ID cards, the new option won’t be available until the secretary of state’s current technology vendor contract ends in 2024.

Rice said that Brave Space Alliance and Southsiders Organized for Unity and Liberation will work with the Cook County medical examiner’s office and funeral homes to make sure trans people are not misgendered or deadnamed during end-of-life care.

“That is something that our community doesn’t have the pleasure and privilege to think about, is after death care. We’re just trying to survive right now,” Rice said. “The launch of the Dignity Project is to instill dignity while you’re here. And after death as well.”

Death work is necessary, especially for the trans community, said Phoenix Kelley, a death doula based in Jackson, Michigan, whose pronouns are they/them.

“Many funeral directors will go with the family of origins’ wishes, which often means that a trans person is misgendered, deadnamed, dressed as the gender that they did not identify with during their viewing and listed like that in their obituary,” Kelley said. “So one of the things that my work is trying to do is to normalize thinking about what you want your death and after death to look like.”

Kim Sabella, the funeral director at Wolfersberger Funeral Home in O’Fallon, Illinois, near St. Louis, said she encountered a situation recently in which the parents referred to their child who had just died with she/her pronouns, whereas some of the deceased person’s friends and peers used they/them pronouns to refer to them. So, she had to take a step back and confirm what pronouns the decedent preferred in life.

“The bigger issue here is how we all, in our workplaces, need to be more sensitive and more aware. And so not be afraid to just sometimes simply ask the question,” Sabella said. “I think that we just have to stop making assumptions about everybody but especially people that are already disenfranchised … We just have to be kinder humans. And I just think that’s just more important than ever before. And especially when we encounter (others) in the midst of grief and loss.”

Kelley, the death doula, strongly recommends that trans and nonbinary people create an end-of-life care document, naming someone specific that has permission to make medical decisions, and to get that document signed and notarized so that it’s a legal document.

“Even before I started doing any training to be a death doula, I knew that preparing a will or some kind of document for your end-of-life is really important,” they said.

The Illinois Department of Public Health offers online resources to those looking to prepare an advance directive, designate a health care proxy or draw up a living will.

At the Center on Halsted, Len DeWilde of the Transmasculine Alliance Chicago does a workshop about the legal steps trans and nonbinary people can take to preserve their own identity in the event of death. This includes sharing information about the different forms and designations that can be filled out, “especially if your next of kin are either not aware of your gender identity, wishes, or you’re afraid that they would actively try to kind of undo it in your death,” said DeWilde, whose pronouns are he/him. The next workshop will likely be held in December or January, he said.

But for some, delving into these documents can be daunting.

“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” says Sydney Kamuda, a 25-year-old nonbinary artist. “My only hope is that I have people who are around after me who can advocate for me.”
“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” says Sydney Kamuda, a 25-year-old nonbinary artist. “My only hope is that I have people who are around after me who can advocate for me.”

“The conversations surrounding what I would like to happen once I’m gone have been happening for a while, but in terms of really putting that onto paper — I think that’s where a lot of the fear comes into it,” said Chicagoan Sydney Kamuda, a 25-year-old nonbinary artist whose pronouns are they/them. “It’s another fearful idea that you are entering into a space where, again, I’m going to have to explain my pronouns and why I look a certain way.”

One of the reasons death work is necessary, Kelley said, is because of the rates at which trans people — especially trans people of color — are killed.

“We have this sort of this community knowledge that it’s very possible for us to die and especially to die suddenly, but taking the time to make those preparations can be scary,” Kelley said. “Even for me, because it makes it feel more real.”

According to the Human Rights Campaign, at least 32 transgender people have been fatally shot or killed violently in the United States in 2022 so far. In Chicago, at least two transgender women have been killed, including Martasia Richmond in June and Tatiana Labelle in March.

“We say ‘at least’ because too often these stories go unreported — or misreported,” the Human Rights Campaign notes on its website. “In previous years, the majority of these people were Black and Latinx transgender women.”

Since the Human Rights Campaign began tracking fatal violence against trans people in 2013, it has recorded 12 deaths in Chicago, all of which have been Black transgender women.

Deadnaming and misgendering trans people, Rice said, translates into not having an accurate count of trans deaths and a consequent inability to fully understand the violence trans folks face — “because so many trans deaths are not labeled trans deaths.”

“But when we don’t know that these people who are dying are actually trans folks, then how are we going to get toward any sort of actual liberation?” Rice asked.

Nonbinary artist Kamuda, who was 16 years old when their father died of complications from lung cancer, said this close experience with death has made them think about their own mortality. Death, they said, is one of the singular unifying factors in everybody’s lives.

“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” Kamuda said. “My only hope is that I have people who are around after me who can advocate for me.”

Complete Article HERE!

The Death Predictor

— A Helpful New Tool or an Ethical Morass?

by Karen Weintraub

Whenever Eric Karl Oermann has to tell a patient about a terrible prognosis, their first question is always: “how long do I have?” Oermann would like to offer a precise answer, to provide some certainty and help guide treatment. But although he’s one of the country’s foremost experts in medical artificial intelligence, Oermann is still dependent on a computer algorithm that’s often wrong.

Doctors are notoriously terrible at guessing how long their patients will live.

Artificial intelligence, now often called deep learning or neural networks, has radically transformed language and image processing. It’s allowed computers to play chess better than the world’s grand masters and outwit the best Jeopardy players. But it still can’t precisely tell a doctor how long a patient has left – or how to help that person live longer.

Someday, researchers predict, computers will be able to watch a video of a patient to determine their health status. Doctors will no longer have to spend hours inputting data into medical records. And computers will do a better job than specialists at identifying tiny tumors, impending crises, and, yes, figuring out how long the patient has to live. Oermann, a neurosurgeon at Mount Sinai, says all that technology will allow doctors to spend more time doing what they do best: talking with their patients. “I want to see more deep learning and computers in a clinical setting,” he says, “so there can be more human interaction.” But those days are still at least three to five years off, Oermann and other researchers say.

Doctors are notoriously terrible at guessing how long their patients will live, says Nigam Shah, an associate professor at Stanford University and assistant director of the school’s Center for Biomedical Informatics Research. Doctors don’t want to believe that their patient – whom they’ve come to like – will die. “Doctors over-estimate survival many-fold,” Shah says. “How do you go into work, in say, oncology, and not be delusionally optimistic? You have to be.”

But patients near the end of life will get better treatment – and even live longer – if they are overseen by hospice or palliative care, research shows. So, instead of relying on human bias to select those whose lives are nearing their end, Shah and his colleagues showed that they could use a deep learning algorithm based on medical records to flag incoming patients with a life expectancy of three months to a year. They use that data to indicate who might need palliative care. Then, the palliative care team can reach out to treating physicians proactively, instead of relying on their referrals or taking the time to read extensive medical charts.

But, although the system works well, Shah isn’t yet sure if such indicators actually get the appropriate patients into palliative care. He’s recently partnered with a palliative care doctor to run a gold-standard clinical trial to test whether patients who are flagged by this algorithm are indeed a better match for palliative care.

“What is effective from a health system perspective might not be effective from a treating physician’s perspective and might not be effective from the patient’s perspective,” Shah notes. “I don’t have a good way to guess everybody’s reaction without actually studying it.” Whether palliative care is appropriate, for instance, depends on more than just the patient’s health status. “If the patient’s not ready, the family’s not ready and the doctor’s not ready, then you’re just banging your head against the wall,” Shah says. “Given limited capacity, it’s a waste of resources” to put that person in palliative care.

The algorithm isn’t perfect, but “on balance, it leads to better decisions more often.”

Alexander Smith and Sei Lee, both palliative care doctors, work together at the University of California, San Francisco, to develop predictions for patients who come to the hospital with a complicated prognosis or a history of decline. Their algorithm, they say, helps decide if this patient’s problems – which might include diabetes, heart disease, a slow-growing cancer, and memory issues – make them eligible for hospice. The algorithm isn’t perfect, they both agree, but “on balance, it leads to better decisions more often,” Smith says.

Bethany Percha, an assistant professor at Mount Sinai, says that an algorithm may tell doctors that their patient is trending downward, but it doesn’t do anything to change that trajectory. “Even if you can predict something, what can you do about it?” Algorithms may be able to offer treatment suggestions – but not what specific actions will alter a patient’s future, says Percha, also the chief technology officer of Precise Health Enterprise, a product development group within Mount Sinai. And the algorithms remain challenging to develop. Electronic medical records may be great at her hospital, but if the patient dies at a different one, her system won’t know. If she wants to be certain a patient has died, she has to merge social security records of death with her system’s medical records – a time-consuming and cumbersome process.

An algorithm that learns from biased data will be biased, Shah says. Patients who are poor or African American historically have had worse health outcomes. If researchers train an algorithm on data that includes those biases, they get baked into the algorithms, which can then lead to a self-fulfilling prophesy. Smith and Lee say they’ve taken race out of their algorithms to avoid this bias.

Age is even trickier. There’s no question that someone’s risk of illness and death goes up with age. But an 85-year-old who breaks a hip running a marathon should probably be treated very differently than an 85-year-old who breaks a hip trying to get out of a chair in a dementia care unit. That’s why the doctor can never be taken out of the equation, Shah says. Human judgment will always be required in medical care and an algorithm should never be followed blindly, he says.

Experts say that the flaws in artificial intelligence algorithms shouldn’t prevent people from using them – carefully.

Researchers are also concerned that their algorithms will be used to ration care, or that insurance companies will use their data to justify a rate increase. If an algorithm predicts a patient is going to end up back in the hospital soon, “who’s benefitting from knowing a patient is going to be readmitted? Probably the insurance company,” Percha says.

Still, Percha and others say, the flaws in artificial intelligence algorithms shouldn’t prevent people from using them – carefully. “These are new and exciting tools that have a lot of potential uses. We need to be conscious about how to use them going forward, but it doesn’t mean we shouldn’t go down this road,” she says. “I think the potential benefits outweigh the risks, especially because we’ve barely scratched the surface of what big data can do right now.”

Complete Article HERE!

A researcher’s quest to make end-of-life care more equitable for Black Americans

Black Americans are at greater risk for serious illnesses like dementia and kidney failure, but they’re less likely to receive the kinds of care that can make living and dying with these diseases less painful.

By Leslie Walker, Dan Gorenstein

The four months of care Annie Mae Bullock received for her stage 4 lung cancer were rocky at best. But the final three days of that care, her daughter Karen Bullock said, were excellent.

Annie Mae spent those few days in hospice care at home surrounded by loved ones singing, chanting and praying as she passed.

“We did all of the things we knew she would have wanted us to do,” Karen Bullock said. “And we didn’t have to worry about whether we were being judged.”

That was one of the few times during those hard four months that Bullock and her family hadn’t felt judged. They felt judged when Annie Mae initially declined chemotherapy and later on, when she asked why she needed a legal document outlining her end-of-life wishes.

Bullock is grateful that her mother had those days at home in hospice. She knows many Black families don’t get them.

Research shows that, for seriously ill patients, high-quality supports like advance care planning, hospice and palliative care can alleviate suffering for them – and their families. Benefits include reduced pain and emotional distress, and fewer unwanted interventions.

But Black patients, who are at greater risk for many serious illnesses, are less likely to receive these supports than White patients. For example, just 35 percent of Black seniors eligible for hospice care through Medicare actually receive it, compared to 50 percent of White Medicare beneficiaries.

A lonely road

This is a world Bullock has personal and professional experience navigating. She is a licensed clinical social worker and professor at the Boston College School of Social Work. And for the last two decades, Bullock has been studying why seriously ill Black patients – with incurable conditions like cancer or kidney failure – are less likely to get palliative care, and what it would take to change that.

“In retrospect, seeing that my mother could actually die well is what set me on this journey,” Bullock said.

She has struggled to find funding for her work, told repeatedly to focus on other topics or use data sets that already exist.

“But the large data sets don’t answer the questions that have not yet been asked,” Bullock said.

Through two decades of persistence amassing small studies and focus groups, and the work of others, Bullock has identified some of the barriers. The two biggest, she said, are the failure of the U.S. health care system to build trust with Black families and a lack of culturally competent care.

A system that can’t be trusted in life or in death 

America’s legacy of racism runs deep throughout its health care system, shaping the care Black patients receive and the medical decisions they make – including at the end of life, according to Bullock.

She recalled conversations with Black seniors who remember when their local hospital was segregated or when their communities were targeted with toxic waste sites.

“It’s difficult to convince someone that there is a team of people who want you to die well, when nobody cared if you lived well,” Bullock said.

Racial bias still exists in health care today. Nearly 1 in 3 Black adults in a recent survey said they had been treated poorly by a health care provider because of their race or ethnicity. More than 20 studies document that seriously ill Black patients are less likely to have their pain properly treated, diagnosed or managed.

Bullock said it is a rational decision for people to reject services from a system that has not proven trustworthy.

A culturally incongruent model of care

Bullock has focused a lot of her work on hospice – the kind of end-of-life care that benefitted her own mom. It often happens at home and is free of aggressive intervention.

But after studying the care experiences of more than 1,000 older Black adults and caregivers, Bullock came to the conclusion that certain aspects of the hospice care philosophy, which originated in Europe, are what she calls culturally incongruent.

“This is a European model of care that many White people find to be extremely helpful in dying a good death and having their needs met until the end,” Bullock said.

But she points to the spiritual care component of hospice as one common source of incompatibility. Surveys show spirituality plays a much larger role in the lives of Black families, but White hospice workers may not be familiar with those religious traditions and beliefs.

The least ideal time to explain your cultural preferences, said Bullock, is when you are sick or dying.

“When a patient and or family member has to educate you about their culture while they are receiving care, the message you’re sending is, ‘I don’t know anything about you. I haven’t learned to take care of you,’” she said.

A path toward more equitable care for the seriously ill

For years, experts have been calling for greater equity in care for the seriously ill and dying, but the COVID-19 pandemic has brought renewed attention to the issue.

Some experts, including Bullock, are prioritizing collecting better data and diversifying the medical workforce. Others are focused on expanding access to palliative care, which offers much of the same physical, emotional and spiritual support as hospice without requiring patients to cease aggressive interventions. Research shows Black patients tend to prefer having more intensive treatment options available even at the end of life.

Additional attempts to reduce racial disparities include programs that engage Black churches to reach more patients and those that offer more culturally tailored palliative care. More research is needed to evaluate the effectiveness and scalability of these and other interventions.

Bullock acknowledged working on health care equity can sometimes feel like shouting into a void. On especially hard days she returns to the memory of her mother’s final moments.

As Annie Mae appeared to lose consciousness, Bullock’s family wondered if they should continue their praying and singing and chanting.

It was the hospice social worker who explained the hospice philosophy that hearing is the last sense to go, and gave them a piece of advice Bullock will never forget.

“Continue to say the things you want to say,” the worker urged the Bullock family. “She can hear you even if she can’t respond.”

Complete Article HERE!

A new vision for death and dying

— The Lancet Commission on the Value of Death

The story of dying in the 21st century is a story of paradox. Covid-19 has meant people have died the ultimate medicalised deaths, often alone in hospitals with little communication with their families. But in other settings, including in some lower income countries, many people remain undertreated, dying of preventable conditions and without access to basic pain relief. The unbalanced and contradictory picture of death and dying is the basis for the Lancet Commission on the Value of Death. Drawing on multidisciplinary perspectives from around the globe, the Commissioners argue that death and life are bound together: without death there would be no life. The Commission proposes a new vision for death and dying, with greater community involvement alongside health and social care services, and increased bereavement support.

A modern witch celebrates the cycle of life and death at the confluence of cultures

— This time of year, a bruja, or witch, practices central Mexican Indigenous rituals and modern pagan ones, both honoring the Earth and “us as individuals as part of nature.” But the holidays of the Day of the Dead and Samhain are not the same.

The Rev. Laura Gonzalez poses after teaching about Day of the Dead at a bookstore in Chicago in 2019.

By

As Americans of all faiths prepare for Halloween with costumes and candy or the Day of the Dead with food and flowers, the pagan community is also preparing for its holiday celebrating death and rebirth.

Samhain is the third and final harvest festival of the pagan Wheel of the Year, as the holiday calendar is known in many Earth-based religions.

“(Modern) Pagans have incorporated the seasonal concern with the dead in a holy day that celebrates the cyclicity of life, death, and rebirth,” writes folklorist and pagan scholar Sabina Magliocco in her book “Witching Culture.” 

Not unlike the Day of the Dead and Halloween, Samhain (a Gaelic word pronounced “Sow-en”) includes feasting and honoring one’s ancestors, though those celebrating Samhain are likely to add some divination. Based largely on Irish folk religion, it is a time when the divide between the physical and spiritual worlds are believed to be thin.

The Rev. Laura González, who is a practicing witch and a pagan educator and podcaster in Chicago, celebrates all three. “(My practice) is a hodgepodge,” she laughs.

The Rev. Laura Gonzalez celebrating Tlaxochimaco 2022 in Little Village, Chicago. Courtesy photo
The Rev. Laura Gonzalez celebrating Tlaxochimaco 2022 in Little Village, Chicago.

González merges modern paganism with Mexican traditions, including practices indigenous to central Mexico, where she is from. “At their core, modern paganism and these indigenous practices both honor the Earth,” she said. Nature reverence is essential, she said, to her spiritual path.

“Let me describe to you what happens in my life,” González said in a phone interview. On Oct. 1, the decorations go up for Halloween, a purely secular holiday for her. Then, around Oct. 27, she sets up a Day of the Dead altar to honor deceased relatives, as most Mexicans do about this time, she said. “My mother died on Oct. 27, 2011. I believe it was her last wink to me,” said González.

Since then, González has been honoring her mother with bread and coffee but has also made it her mission to teach others about the Day of the Dead and its origins. She teaches those traditions as well as modern paganism both locally and over the internet at the pagan distance-learning Fraternidad de la Diosa in Chihuahua, Mexico.

On Samhain, González always hosts a small ritual for her Pagan students and participates in Samhain celebrations, either as an attendee or organizer. Some years she travels to Wisconsin to be with fellow members of the Wiccan church Circle Sanctuary.

Samhain is traditionally honored on Oct. 31, but some pagans celebrate it Nov. 6 or 7, an astrologically calculated date. Regardless, group celebrations must often yield to modern schedules, and González said she will celebrate an early Samhain this year.

“My (Samhain) celebration is for the ancestors and for the Earth going into slumber — the Goddess goes to sleep,” González said. She likes to focus her ritual on modern pagan trailblazers, often referred to as “the mighty dead,” rather than on her relatives, which she honors on the Day of the Dead.

González’s central Mexican indigenous practice and her modern pagan practice, rooted in  northern Mexico and the United States, “are very similar,” she added, both honoring the Earth and “us as individuals as part of nature,” something she believes has been lost in modern Day of the Dead traditions. However, she quickly added, “Indigenous practices are not pagan.”

Growing up in Mexico City, González was surrounded by mainstream Mexican culture, with Day of the Dead festivals and altars. As she was exposed to the Indigenous traditions that are still woven through Mexican culture, she explained, she began to study folk magic and traditions, as well as “Native philosophies.”

The Day of the Dead, she said, “is the ultimate syncretic holiday,” a merger of the European-based Catholic traditions with Indigenous beliefs and celebrations. “The practices brought to Mexico by the Catholic colonizers were filled with pagan DNA,” she said. All Saints’ Day and All Souls’ Day contain remnants of traditional Samhain and other older beliefs, she noted.

“These colonizers came to a land filled — filled — with skulls and its imagery,” she said, which must have been frightening and somewhat of a culture shock, she added.

An altar during Tlaxochimaco 2022 commemorations in Little Village, Chicago. Courtesy photo
An altar during Tlaxochimaco 2022 commemorations in Chicago.

González is now actively participating in the revival of the Indigenous traditions as a teacher and celebrant. The Indigenous holiday, she said, is a 40-day celebration. The first 20 days is called Tlaxochimaco, or the birth of flowers, and the second is Xoco Huetzi, or the fall of the fruit.

“We all are flowers,” she explained. We grow, flower, bloom and then become fruit. Eventually falling and becoming seed, and the cycle continues. The Aztecs “used this mythology to describe life and life cycles,” she said.

“But there are people who do not make it to fruit. They die young,” González explained. These people are honored during Tlaxochimaco.

During Xoco Huetzi, celebrations are held to honor those who have made it to old age before passing. Both festivals traditionally involve dancing, she said, which is considered an offering to the dead. 

The 40-day celebration was eventually condensed into two days aligning with the colonizers’ Catholic traditions, she said, becoming the modern Day of the Dead celebration, a holiday that is quickly becoming as popular north of the Mexican border as Halloween is.

While González is not offended by purely secular Halloween celebrations, even with its classic depiction of witches, she struggles with the growing commercialization of the Day of the Dead. “I know what I am, and I know what I celebrate,” she said, speaking of Halloween. “I find it funny that the wise woman has been made into something scary.”

What does offend her is people dressed as sugar skulls. “It’s a double-edged sword,” González said. “It’s a source of pride knowing the world loves our culture,” she said. However, she added, “You love our culture, you love our music, you love our food, you love our traditions, you love our aesthetics, you love our parties and holidays, you love all of that, but you don’t love us.”

Complete Article HERE!

Death as Life’s Work

In her new book, Hayley Campbell seeks to demystify death by sharing the perspectives of funeral home directors, gravediggers and others

By Robert DiGiacomo

What happens when people die is often glossed over. Yet as the adage goes, death is one of life’s few certainties.

Journalist Hayley Campbell in her new book, “All the Living and the Dead: From Embalmers to Executioners, an Exploration of the People Who Have Made Death Their Life’s Work,” sets out to demystify death by writing about “the naked, banal reality of this thing that will come to us all.”

It’s a subject for which Campbell, 36, has been preparing for most of her life. As a little girl, she recalls death being ever present — she drew dead bodies after seeing her comic book artist father’s graphic novel about Jack the Ripper in progress, questioned the version of death from her Catholic school education and saw her first body at 12, when her friend, Harriet, drowned while trying to rescue her dog. The London-based Campbell has since written regularly about death and related topics for Wired, BuzzFeed, Vice and other publications.

“On an existential level, we have to think about death; not only will we die, but everyone we know and love will die.”

In “All the Living and the Dead,” Campbell spends time with those whose professional lives revolve around death, including funeral directors, gravediggers and an executioner. Warning to anyone who’s squeamish: She provides vivid details of what it’s like to dress the dead, perform an autopsy and process bodies for use in medical education.

“On an existential level, we have to think about death; not only will we die but everyone we know and love will die,” Campbell told Next Avenue. “I can see why people would avoid that topic, but once you start talking about death with people for whom it’s their job, you can see how you can compartmentalize it.”

Here are some key takeways about death — and life — from Campbell and the book:

Death is Never Far Away, Whether We Acknowledge It or Not

As part of her research, Campbell went places where few civilians dare. “We don’t want to think about it, so it’s sort of a secret,” Campbell says of many death rituals. “I love seeing the stuff that as a general civilian person you can’t see. It can be behind doors you pass every day — on every high street, there is a funeral home — but you don’t realize something interesting is happening there every day.”

Even when we must go to a funeral home, whether to plan a service for a loved one or attend a memorial, the experience is usually a fleeting encounter. For those in the funeral industry, it’s their way of being.

“It was a huge privilege to talk to those people,” Campbell says. “The thing they kept telling me was they do this job every day. When families have to use them, the family will be hugely involved and their best friends for two weeks. After the funeral, they will disappear and go back to not thinking that embalmers exist. I wanted to get through the appreciation of the work that has to happen. The world would look completely different if we didn’t have people collecting the bodies.”

There’s a Difference Between Being Desensitized and Detached About Death

As we enter middle age, death becomes ever more prominent, as we face the loss of parents, siblings, close friends, a spouse or partner — and our own mortality. Yet few of us are prepared for major loss. But when death is your reality, you have to develop a way to compartmentalize.

“People think death workers must be desensitized, but there’s a difference between people being desensitized and detached in a way that’s helpful,” Campbell says. “They’re not not thinking about death — they have thought about it a lot and stepped back just enough to do their jobs. They have thought about it so much that they have made peace with it. But I don’t think we as a society have been able to deal with it. So when someone dies, we completely fall apart.”

A New Generation is Rethinking the Funeral Ritual

As a younger generation — including more women — enter the funeral industry, rituals and attitudes are changing. This might mean a more personalized funeral service, a natural burial without a body being embalmed or even loved ones participating in a traditional ritual like dressing the dead, as Campbell did as part of her research.

“The role of the funeral director has changed to more of a counselor role rather than someone who just organizes the hearse,” Campbell says. “I do think women are changing it. Female funeral directors are more into letting families do things the way they want. But if they want tradition, they will organize it with the horse and the cart. I think they are just more open — the thing that is common among all the women in the funeral industry is they want to give people a voice and not force a certain way of doing anything on anyone.”

“The role of the funeral director has changed to more of a counselor role rather than someone who just organizes the hearse.”

Details Matter When Handling the End of Someone’s Life

Whether it’s the funeral director who kept underwear and socks in different sizes because families often forgot to bring undergarments for their loved one and he couldn’t live with someone not being properly dressed in their casket — or a gravedigger who provided a certain type of soil for the minster to throw on a coffin that would land more softly, those dealing with death regularly understand the difference the smallest details can make.

“They all had a sense of compassion and a sense of empathy,” Campbell says. “They all were doing little things in their job that no one would notice but they felt was the right thing to do. It may seem like something small, but when you think about grieving people and how they are so sensitive to everything, they are massive.”

Death Has a Way of Grounding You

Having written about death for most of her career, Campbell is not someone who’s faint of heart. But having immersed herself in death for three years to write the book, she came away with a new appreciation for life.

“It’s not like my eyes have been opened to things that I didn’t know about but the details have been filled in,” Campbell says. “I’ve seen dead babies and old, old dead people. I’m far more conscious of the old cliché that life is short. That is true, but you have no idea how much time you’re going to get. I think I’m more conscious of time.”

Complete Article HERE!