Category: Cultural Expressions

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Comparatively few African Americans make end of life plans

By Glenn Ellis

The entire lifespan of most African Americans is consumed by efforts to overcome obstacles, inequality, and in many cases, institutional racism.

The most difficult point in this most tiring journey is often the end-of-life. For the disproportionate number of us is when death is accompanied by the dilemmas around how we choose to die.

Hospice; Palliative Care; Advance Directives; and Compet-ency become terms that we, or our loved ones, all of a sudden are faced with and expected to deal with.

Studies and observations show that, likewise disproportionately, we are not prepared for this final stage of life.

What we know is that African Americans are less likely than any other group to be prepared for end-of-life, and not surprisingly, are less likely to have a prepared Advance directive.

First, let’s talk about Advanced Directives. This is the document that should be prepared to outline, in detail, what type of care (if any) we desire as our lives come to an end, and we are not able to make decisions for ourselves.

An Advanced Directive includes things that typically are not even thought about during times when life is good.

Generally, it will include things such as a living will or do-not-resuscitate order, or in identification of a health care surrogate. Regrettably, it’s not until we are in a hospital ICU; Hospice Center; or even on Home Hospice that we (or our loved ones) are confronted with having to make difficult decisions, while dealing with imminent death.

In spite of the fact that studies show that 80 percent of Americans would prefer to die at home, the reality is that 60 percent of us will die in a hospital; 20 percent of us will die in a nursing home; and only 20 percent will end up in a situation where we will be able to make our transition in the comfort and peace of our own home.

If you are not competent, or capable, to make medical decisions but do not have an advance directive, or it is unavailable when needed, decisions will nevertheless have to be made.

In 2013, The Pew Foundation did a study and found that while 73 percent of all Americans have given “some thought” to end-of-life, only 37 percent of African Americans have done the same. This means that doctors and others on the care team of a terminally-ill patient may decide to continue providing care and treatment, when you may feel that your loved one has had enough, and should be allowed to die in peace, with dignity. In the absence of an Advance Directive, this could become a point of contention, and the patient is caught in the middle. Or, it could be the other way around, you may feel that there is still hope for a recovery, and the doctors feel that there isn’t. Again, the patient lies there in limbo, and often suffering unnecessarily. For African Americans, it’s worse. One study found that only 13 percent of all African Americans have an Advance Directive in place.

It can be a difficult, and often, an uncomfortable conversation, but collectively, we have to begin to have conversations during the “good” times in life with our families and loved ones about what we do and don’t want should we ever find ourselves in a position where we are unable to make medical decisions for ourselves.

Think about how often we attend funerals, and families are still reeling over how things came to an end with conflict and contention between families of a patient who died, and the medical staff at the hospital. Think about how different it would be if we made our wishes known, before something happened unexpectedly.

A few things that may be helpful for you in getting an Advance Directive for yourself:

First you need to familiarize yourself with the term: life-sustaining treatments. Nolo’s Plain-English Law Dictionary defines this as “Medical procedures that would only prolong the process of dying or sustain a condition of permanent unconsciousness. A patient who is receiving life-sustaining treatment will die soon, whether or not treatment is administered. Life-sustaining treatment may include a respirator, cardiopulmonary resuscitation (CPR), dialysis, surgery, and other medical procedures.” Would you want any of these? If so, under what circumstances?

Most importantly, let your loved ones know what you have in your Advance Directive. People only like surprises for their birthdays. Don’t wait for them to find out at an emotionally difficult time, when they are grappling with the inevitability of your death.

You don’t need a lawyer to create your Advance Directive. But you do need to make sure you understand the laws of the state you live in regarding Advance Directives. Some states have restrictions that you need to be aware of that may prohibit your wishes.

Complete Article ↪HERE↩!

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AI Could Predict Death. But What If the Algorithm Is Biased?

By Amitha Kalaichandran

Earlier last month the University of Nottingham published a study in PloSOne about a new artificial intelligence model that uses machine learning to predict the risk of premature death, using banked health data (on age and lifestyle factors) from Brits aged 40 to 69. This study comes months after a joint study between UC San Francisco, Stanford, and Google, which reported results of machine-learning-based data mining of electronic health records to assess the likelihood that a patient would die in hospital. One goal of both studies was to assess how this information might help clinicians decide which patients might most benefit from intervention.

The FDA is also looking at how AI will be used in health care and posted a call earlier this month for a regulatory framework for AI in medical care. As the conversation around artificial intelligence and medicine progresses, it is clear we must have specific oversight around the role of AI in determining and predicting death

There are a few reasons for this. To start, researchers and scientists have flagged concerns about bias creeping into AI. As Eric Topol, physician and author of the book Deep Medicine: Artificial Intelligence in Healthcare, puts it, the challenge of biases in machine learning originate from the “neural inputs” embedded within the algorithm, which may include human biases. And even though researchers are talking about the problem, issues remain. Case in point: The launch of a new Stanford institute for AI a few weeks ago came under scrutiny for its lack of ethnic diversity.

Then there is the issue of unconscious, or implicit, bias in health care, which has been studied extensively, both as it relates to physicians in academic medicine and toward patients. There are differences, for instance, in how patients of different ethnic groups are treated for pain, though the effect can vary based on the doctor’s gender and cognitive load. One study found these biases may be less likely in black or female physicians. (It’s also been found that health apps in smartphones and wearables are subject to biases.)

In 2017 a study challenged the impact of these biases, finding that while physicians may implicitly prefer white patients, it may not affect their clinical decision-making. However it was an outlier in a sea of other studies finding the opposite. Even at the neighborhood level, which the Nottingham study looked at, there are biases—for instance black people may have worse outcomes of some diseases if they live in communities that have more racial bias toward them. And biases based on gender cannot be ignored: Women may be treated less aggressively post-heart attack (acute coronary syndrome), for instance.

When it comes to death and end-of-life care, these biases may be particularly concerning, as they could perpetuate existing differences. A 2014 study found that surrogate decisionmakers of nonwhite patients are more likely to withdraw ventilation compared to white patients. The SUPPORT (Study To Understand Prognoses and Preferences for Outcomes and Risks of Treatments) study examined data from more than 9,000 patients at five hospitals and found that black patients received less intervention toward end of life, and that while black patients expressed a desire to discuss cardiopulmonary resuscitation (CPR) with their doctors, they were statistically significantly less likely to have these conversations. Other studies have found similar conclusions regarding black patients reporting being less informed about end-of-life care.

When it comes to death and end-of-life care, these biases may be particularly concerning, as they could perpetuate existing differences. A 2014 study found that surrogate decisionmakers of nonwhite patients are more likely to withdraw ventilation compared to white patients. The SUPPORT (Study To Understand Prognoses and Preferences for Outcomes and Risks of Treatments) study examined data from more than 9,000 patients at five hospitals and found that black patients received less intervention toward end of life, and that while black patients expressed a desire to discuss cardiopulmonary resuscitation (CPR) with their doctors, they were statistically significantly less likely to have these conversations. Other studies have found similar conclusions regarding black patients reporting being less informed about end-of-life care.

However, in some cases, cautious use of AI may be helpful as one component of an assessment at end of life, possibly to reduce the effect of bias. Last year, Chinese researchers used AI to assess brain death. Remarkably, using an algorithm, the machine was better able to pick up on brain activity that had been missed by doctors using standard techniques. These findings bring to mind the case of Jahi McMath, the young girl who fell into a vegetative state after a complication during surgical removal of her tonsils. Implicit bias may have played a role not just in how she and her family were treated, but arguably in the conversations around whether she were alive or dead. But Topol cautions that using AI for the purposes of assessing brain activity should be validated before they are used outside of a research setting.

We know that health providers can try to train themselves out of their implicit biases. The unconscious bias training that Stanford offers is one option, and something I’ve completed myself. Other institutions have included training that focuses on introspection or mindfulness. But it’s an entirely different challenge to imagine scrubbing biases from algorithms and the datasets they’re trained on.

Given that the broader advisory council that Google just launched to oversee the ethics behind AI is now canceled, a better option would be allowing a more centralized regulatory body—such as building upon the proposal put forth by the FDA—that could serve universities, the tech industry, and hospitals

Artificial intelligence is a promising tool that has shown its utility for diagnostic purposes, but predicting death, and possibly even determining death, is a unique and challenging area that could be fraught with the same biases that affect analog physician-patient interactions. And one day, whether we are prepared or not, we will be faced by the practical and philosophical conundrum by having a machine involved in determining human death. Let’s ensure that this technology doesn’t inherit our biases.

Complete Article ↪HERE↩!

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Families in Europe were buried together during the Stone Age

By Chrissy Sexton

An international research team led by Uppsala University has discovered that individuals buried in megalithic tombs in Ireland and Sweden during the Stone Age were relatives. The families can be traced for more than ten generations, which indicates that megaliths were graves for kindred groups in northwestern Europe.

Beginning around 4,500 BCE, megalithic monuments emerged along the Atlantic European shoreline that were often used for funeral practices. However, the social structure and origin of the groups that began constructing the stone monuments remains a mystery.

For the current study, the researchers sequenced and analyzed the genomes of 24 individuals recovered at five megalithic burial sites, representing megalithic construction in northern and western Europe.

By using radiocarbon-dating, the team traced the remains back to between 3,800 and 2,600 BCE. Genome sequencing revealed that the individuals in the megaliths were closely related to Neolithic farmers in northern and western Europe, but not closely related to farmers in central Europe. On the British Isles, the males in the tomb outnumbered the females.

“We found paternal continuity through time, including the same Y-chromosome haplotypes reoccurring over and over again,” said study co-author Helena Malmström. “However, female kindred members were not excluded from the megalith burials as three of the six kinship relationships in these megaliths involved females.”

The genetic analysis showed close family ties among the individuals buried within the megaliths. In two particular tombs that were located about two kilometers away from each other, it appeared that parents were buried together with their offspring. “This came as a surprise. It appears as these Neolithic societies were tightly knit with very close kin relations across burial sites,”  said co-author Federico Sanchez-Quinto.

The Ansarve site on the island of Gotland in the Baltic Sea is located in an area that was home to mostly hunter-gathers.

Megalith tombs on the British Isles

“The people buried in the Ansarve tomb are remarkably different on a genetic level compared to the contemporaneous individuals excavated from hunter-gather-contexts, showing that the burial tradition in this megalithic tomb, which lasted for over 700 years, was performed by distinct groups with roots in the European Neolithic expansion,” explained study co-author Magdalena Fraser.

“That we find distinct paternal lineages among the people in the megaliths, an overrepresentation of males in some tombs, and the clear kindred relationships point to towards the individuals being part of a patrilineal segment of the society rather than representing a random sample from a larger Neolithic farmer community,” said study senior author Mattias Jakobsson.

“Our study demonstrates the potential in archaeogenetics to not only reveal large-scale migrations, but also inform about Stone Age societies and the role of particular phenomena in those times such as the megalith phenomena,” concluded Sanchez-Quinto.

Complete Article ↪HERE↩!

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‘Soul midwife’ offers companionship to the dying in their final moments

Linda Jane McCurrach is an end-of-life doula – a non-medical, holistic companion who guides and helps people to have a gentle and tranquil death.

Linda McCurrach says it a privilege to do the job she does

By Maria Croce

Midwives are associated with helping to bring new life into the world. But there’s another type who are there at the end, when people are dying.

Linda Jane McCurrach is a “soul midwife” or end-of-life doula – a non-medical, holistic companion who guides and supports the dying to help them have a gentle and tranquil death.

She describes the people she supports as friends and says it’s about helping them have a “good” death. But she admits some people initially find it difficult to grasp the idea that there can be a positive side to something so finite.

Linda Jane added: “People don’t even want to think about having a good death because they can’t imagine dying.

“But in eastern culture, they believe that only by looking at our death can we live fully.”

She sees some parallels between conventional midwives who bring new life into the world and her role for the souls who are leaving.

cancer about 18 months ago, Linda Jane was able to be by her side.

Linda pictured as a baby with her late mum Myra McCurrach, who she was able to be with at her death

She said: “I couldn’t imagine my mum not having someone there. I thought, ‘What would it be like for someone to be on their own?’ It really struck home that I can help people going through this alone.”

Linda Jane has now launched a charity called No One Dies Alone Ayrshire.

For those who are alone, it aims to provide companions in the last 48 hours of life. It also offers respite for those with families.

Companions will offer support at home, in care homes, in hospital and hospices and will enable people to die according to their wishes.

The charity has started its work in East Ayrshire with plans to expand into the rest of the county.

Linda Jane, 48, has five children – Jordan, 23, Lewis, 22, Kai, 17, Nathan, 15 and Freya, eight – and lives near Newmilns in Ayrshire.

Having had difficult experiences and relationship break-ups, she said death puts everything else into perspective.

She added: “You have a greater sense of what’s important.”

The hardest part of her role is when people open up to her in their final days.

She said: “It can be hard to then move back into a normal life. But I surround myself with the right people who help me with that.”

She remembers the first time she sat with someone who was dying.

Linda Jane said: “I was concerned with doing everything right. It wasn’t until the end I realised it’s not really about the stuff you know and the things you can do, it’s about being there.

“Death is individual. It’s not scary. But if the person is feeling a bit scared, you can be a loving presence to help them get through.”

She said the dying want to know what’s happening to them.

Linda’s beloved mum Myra McCurrach who died from cancer 18 months ago

Linda Jane added: “People want to know the process. It’s not commonly spoken about.”

She also helps them make peace with the world.

“Ultimately, death is the major letting go in our lives,” she said. “We have to let go of everything and it starts with letting go of the past.

“Sometimes they need to get things off their chest or make amends with family members and things weighing heavily with them.

“And everybody wants to know where they’re going to go afterwards. Having a visualisation of somewhere they would like to go really helps with that, for instance a meadow full of bluebells.”

Although she’s less scared of dying herself now, Linda Jane said she wouldn’t want to leave her children yet.

She added: “I think hopefully by the time I die, I’ll be ready. I know death can be positive and beautiful.”

Complete Article ↪HERE↩!

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Washington passes bill to become first state to compost human bodies

“We’re making about a cubic yard of soil per person,” the founder of the company Recompose said.

Finished materials from the human-body composting process.

By Ben Guarino

It may soon be legal for the dead to push daisies, or any other flower, in backyard gardens across Washington state. The state legislature recently passed a bill that, if signed by the governor, allows human bodies to be composted — and used for mulch.

As the nation ages, U.S. funeral practices are changing. Rates of cremation surpassed 50 percent in 2016, overtaking burials as the most popular choice. The Census Bureau, in a 2017 report, predicted a death boom: 1 million more Americans are projected to die in 2037 than they did in 2015. Human composting, its supporters say, is an eco-friendly option that can meet this growing demand. A Seattle-based company called Recompose plans to offer a service called “natural organic reduction” (it has two patents pending) that uses microbes to transform the departed — skin, bones and all.

“We have this one universal human experience, of death, and technology has not changed what we do in any meaningful way,” said state Sen. Jamie Pedersen (D), who introduced the bill, which passed with bipartisan support on April 19. “There are significant environmental problems” with burying and burning bodies, he said.

Joshua Trey Barnett, an expert on ecological communication at the University of Minnesota at Duluth, listed the flaws in conventional burials: “We embalm bodies with toxic solutions, bury them in expensive caskets made of precious woods and metals and then indefinitely commit them to a plot of land.” Though incineration has a smaller ecological footprint, estimates suggest the average cremated body emits roughly 40 pounds of carbon and requires nearly 30 gallons of fuel to burn.

The bill awaits Gov. Jay Inslee (D), who placed climate change at the center of the presidential bid he announced in March. “The bill passed the legislature with bipartisan support and appears to be eco-friendly,” said Tara Lee, a spokeswoman in Inslee’s office. Inslee has 20 days to review the bill, which arrived on his desk Thursday. “He has not stated how he will act on this,” Lee said.

Burial practices are largely matters of state, not federal, law. The bill, which would take effect on May 1, 2020, also would legalize alkaline hydrolysis. That method turns bodies to liquid using a base such as lye. In the past decade, more than a dozen states have approved it.

Pedersen said he would be “shocked, frankly,” if the governor did not sign the bill into law.

Recompose founder Katrina Spade met Pedersen in a Seattle coffee shop last year and pitched the idea of legalizing human composting. The company’s system, she said, is a souped-up version of natural microbial decomposition. “It is actually the same process happening on the forest floor as leaf litter, chipmunks and tree branches decompose and turn into topsoil,” Spade said

The company’s service, which would include a funeral ceremony, will cost about $5,500, she said (more than the average cremation but less than burial in a casket). Microbes go to work within a large vessel, about eight feet tall and four feet wide, that fits a single body along with alfalfa, straw and wood chips. Over the course of 30 days, as temperatures in the vessel rise to 150 degrees, decomposition destroys the body, along with most pathogens and pharmaceuticals, Spade said.

Pacemakers would be removed beforehand; artificial joints or other implants sifted out afterward. “We’re making about a cubic yard of soil per person,” Spade said. Families would be allowed to take the compost home, or, because it’s a lot of soil, donate it to conservation groups in the Puget Sound region. Restrictions on where the soil could be applied would mirror rules for scattering ashes — broadly speaking, only on land with an owner’s permission.

The decomposition technique “is now a fairly common procedure” used to dispose of livestock carcasses, said Lynne Carpenter-Boggs, a soil scientist at Washington State University and an adviser to Recompose. During an outbreak of avian flu, Carpenter-Boggs helped farmers implement a similar method to destroy potentially infected poultry.

Carpenter-Boggs recently oversaw a pilot study in which Recompose composted six donated cadavers. The results are still unpublished, but Recompose claimed in a news release the soil met safety thresholds set by the state’s ecology department.

“The material we had, at the end, was really lovely,” Carpenter-Boggs said. “I’d be happy to have it in my yard.”

Barnett said the media often inflates the “ick factor” of human composting. “Very few people I talk with have this response,” he said. He added: “If most folks knew the ins and outs of embalming, I suspect they would find it much ickier in fact than composting

Spade said she has been deluged by emails from those who want to be composted, with particularly enthusiastic correspondents from California, Colorado and Vermont, and overseas from Brazil, the Netherlands and Australia.

“I have a few friends at some of the assisted-living facilities here in Seattle,” Spade said, “and these folks are in their mid-80s saying: ‘Look, we want these options. … We care about the last gesture we leave on this earth.’ ”

Complete Article ↪HERE↩!

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Why Victorians Loved Hair Relics

Victorians were mesmerized by the hair of the dead — which reveals something about about how they saw life.

A case of memorial jewelery made from human hair

By: Matthew Wills

This year marks the 200th anniversary of Walt Whitman‘s birth. To celebrate, the New York Public Library and the Grolier Club are hosting exhibits, both of which will include samples of Whitman’s actual hair. Yes, hair.

In the Victorian era, jewelry made with hair was all the rage. In 1854, the novelist Wilkie Collins wrote that bracelets made of human hair were “in England one of the commonest ornaments of woman’s wear.” Ten years later, Charles Dickens wrote that a man’s watch fob made of hair was the real mark of middle-class respectability.

Victorians on both sides of the Atlantic were particularly mesmerized by the hair of the dead. Victorian literature scholar Deborah Lutz explores “the materiality of death and its artifacts” of the era, finding antecedents in the Christian reliquary tradition, when body parts of saints were considered magical. Protestantism and secularization shifted this fascination toward the sought-after body parts of royals and the very famous (like Napoleon, whose penis is supposedly now in New Jersey). By the middle of the nineteenth century, this long Western tradition had become “increasingly secular, personal, and private.” And concentrated on hair.

Hair was a very tangible reminder, memento, souvenir, and keepsake of a life, and of a body.

Loved ones and relatives could give hair as tokens of love and friendship. Family members or lovers could twine their hair together. After a person’s death, their hair remained; as the Whitman exhibits show, well-preserved hair can last a long time. Hair was a tangible keepsake of a life, and of a body. Perhaps it imparted a sense that you might meet again.

Lutz writes that such relics “work as traces of a life and body completed and disappeared, in this sense something like last words, by they also serve as frames or fragments of the moment of loss.” These present reminders of those who have died speak of a “desire to see death as not permanent, in that material remains might be proof that the loved one still exists somewhere, somehow.” Relic worship also shows a willingness “to dwell in and with the moment of loss itself, to linger over this evidence of death’s presence woven into the texture of life at all turns.”

Romanticism, the Evangelical revival of the 1830s-40s, and Spiritualism’s rise in the 1850s-1860s, all contributed to this “after-death narrative” and the mid-century popularity of “hairwork.”

Lutz reminds us of the passage in Emily Brontë’s Wuthering Heights (1847) when Heathcliff switches his rival Linton’s hair from the locket around the dead Catherine’s neck and replaces it with his own. “Rather than gathering a memento of Catherine for himself, Heathcliff sees to it that a material fragment of his body will go down into the grave with Catherine’s corpse, to intermingle with her flesh.” The notion of the “good death” merges here with the palpable eroticization of death. Of course, Heathcliff’s plans are foiled by Nelly Dean, who twines Linton’s lock around Heathcliff’s—opening “the possibility of a postmortem storm of jealousy.”

Fiction mirrored the times. After her husband’s death in 1861, Queen Victoria had at least eight pieces of jewelry made that incorporated Prince Albert’s hair. The Victorians “found in relic culture a means to respect the irreducible self.” Such a culture, Lutz says, “sees death, and the body itself, as the beginning of stories, not their end.”

Complete Article ↪HERE↩!