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!

I went from being a labor-and-delivery nurse to a death doula.

I help people who want to die on their own terms by refusing food and water.

People who voluntarily stop eating and drinking tend to be terminally ill people whose doctors can’t predict how long they have left to live.

By

  • Nancy Simmers is a death doula whose clients decide to end their lives by refusing food and drink.
  • A former labor-and-delivery nurse, Simmers says the process of death is similar to birth.
  • This is Simmers’ story, as told to Jane Ridley.

This as-told-to essay is based on a conversation with Nancy Simmers. It has been edited for length and clarity.

Most people are taken aback when they hear that I’m a death doula. They’re shocked when I say that I work exclusively with people who want to die on their own terms, by voluntarily stopping eating and drinking.

The method, known as VSED, might seem terrible at first. But it lets you take control of the circumstances of your death.

Most people support the idea of the power of the individual. They understand someone who says, “It’s my life, let me get on with it.” But they feel uncomfortable when someone says the same thing about their death.

I used to be a labor-and-delivery nurse. Over the years, I’ve come to see death and birth as physical, emotional, and spiritual thresholds. They are similar processes. They involve uncertainty, fear of the unknown, and transformation. Both require courage, surrender, release, compassion, and support from others.

Some people reach a point in their life and decide they’re done

The US law largely doesn’t prevent people from choosing to end their life by VSED, which doesn’t require permission from a physician.

Many people who opt for VSED have a terminal illness. But it’s almost impossible to get a firm prognosis for neurological diseases such as ALS and Parkinson’s. People can suffer for years as their bodies and mental capacities deteriorate. Some people reach a certain point and say, “I’m done.” A person in their 90s who has lost their vision, hearing, and bladder control may feel that their quality of life is nil.

A headshot of death doula Nancy Simmers
Nancy Simmers, a death doula, helps people who opt to stop eating and drinking, a method of death known as VSED.

If a doctor won’t certify that you have less than six months to live, you are not eligible for “death with dignity.” The laws — which apply in eight states and Washington, DC — allow people to take lethal drugs under medical supervision.

VSED is another version of death with dignity. Each VSED death I’ve attended has been different, but not undignified. Most of my clients die in their own homes surrounded by their loved ones. It’s a gift. It wasn’t VSED, but when my father was dying of cancer in 1991, my sons — 8 and 5 — were in and out of their grandpa’s room. It doesn’t do anybody any favors to be frightened of death.

VSED requires a lot of planning

A lot of people know nothing — or very little —about VSED. There are some scary myths. People think that it involves great suffering and that it goes on indefinitely. They assume it will affect your life-insurance policy.

VSED is not to be considered lightly. It needs lots of careful planning. It’s reversible up to a point, and there are medications to ease the transition. Family members usually know about the decision and agree that it’s the choice of the individual concerned. Life insurance is mostly straightforward because the doctor does not write “suicide” as the cause of death; they note the person’s underlying condition, such as cancer.

An altar full of photos that pays tribute to the person dying
Simmers set up an altar to celebrate the life of a woman who chose VSED.

People considering VSED in my home county of Whatcom, Washington, find me via word of mouth or online. I’ll arrange to meet with them and their family. My partner, Andrea Fenwick, and I give frank and honest answers. There’s no sugarcoating. We’re part of the nonprofit VSED Resources Northwest, though we advise people across the world.

We can understand why families question their loved one’s decisions. It depends on the case, but we might tell them: “This is your beloved person, and your beloved person is suffering. It’s their body and their choice.”

We’ll tell the family, “Although you will suffer because you’ll miss this person, it’s their choice to end their suffering — how can you be supportive of this choice?”

Once things are decided, we mark the start date with a little ceremony. We celebrate the person and their life and their choice. We thank them and shower them with love and gratitude.

Many families make a small altar. It’s the focal point of their room. They’ll decorate it with family photos and precious items that remind the loved one and their visitors about their interests and skills. It’s a reflection of a life well lived.

I like to light a candle, symbolizing the person as a spirit. After the death, it becomes part of a leave-taking ceremony and is blown out.

VSED is a serious commitment, but it doesn’t have to be a solemn affair. My last client lightened things up with a touch of humor. We’d ask how she was feeling during her first few days of VSED — she joked about wanting a cold Pepsi.

I tell my folks that dying has been around for millions of years. Your body knows what to do. Just trust your body. Our bodies know how to breathe. Our bodies know how to process food. Our bodies know how to birth. They know how to die.

It can be hard for families to watch as their loved one becomes confused because of dehydration

VSED takes an average of nine to 11 days. The person is usually up and about for the first few days. But the middle stage, which can last almost a week, is the marathon.

They’ll need medication — a mixture of morphine and anxiety drugs — to help them through the confusion and delirium caused by dehydration. It’s hard for the family to watch. A designated person will step in if the loved one calls for food or water.

The final stage lasts about three days. Dehydration makes people sleepy. It’s reassuring for everyone because you lose consciousness when your body goes into crisis mode.

The lack of fluids affects your kidneys and liver. The excess bilirubin makes the skin look yellow. The feet and the fingertips turn blue. Breathing becomes shallow or agonal.

Friends and relatives gather at the bedside to say goodbye. It reminds me of families coming together to welcome a newborn. We want the very best for the baby; we support them when their journey in life begins. People deserve the same support when the journey ends.

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!

The Importance Of Death

In nature, death is a returning of nutrients to be remade into new life. Spring flowers will emerge where the turtle died to nourish bees, deer and other animals.

By Sarah Hatfield

We think of autumn as a time of harvest and brilliant color, a time when we can start to read more books and slow down and not feel so guilty doing so. Some might think of it as the ‘waiting room’ of the holidays, anxious to put up their lights and greenery. Still more might see work — falling leaves mean raking, mowing, and cleaning out gutters; moving firewood, putting gardens to bed, planting bulbs, and cleaning up the detritus of summer around the house.

Rarely do people think about autumn as death. Now I’m not trying to bring down the mood, but really, if you think about: those beautiful gold and scarlet leaves? Dying. The leaf piles that spark laughter and among children? Piles of death. The poor animals looking for secure places to spend the winter? Dead on the side of the road. Okay, perhaps this is all a bit harsh, but here’s the point I want to make.

Death is important, natural, and surrounds us daily. And honestly, most people I’ve met in this country don’t have a healthy relationship with it. I’ve been thinking about this a lot lately, reading some things from other people, and what really inspired this article was Halloween and how in other countries and in past cultures there is a celebration of death. Called many things, but here’s the point: they celebrate death.

Death is a returning, to all that we were before. No matter your belief. Perhaps you return to the soil, to your god, to the arms of the ones you’ve lost, or every dog you’ve ever had. Perhaps you return to a heavenly realm, a city of gold, or an inferno of fire and pain. That part differs for everyone (but may have something to do with why a lot of people fear death). Death itself is constant, ever present, necessary, and unavoidable. The circumstances leading up to a death might be tragic, sudden, or painful; or they might be slow, consuming, or painless. The death itself is the retuning, and something we should celebrate.

My dad died a few years ago in September, my dear Ryan died in December entirely too long ago: bookends to the season that grows darker and deeper. These are the two most recent deaths I carry with me. Before them, my aunt, my cousin, all four grandparents, acquaintances. Some expected, some not; some painful, some peaceful. Yet they cross my mind and heart and are still part of my life.

The tiny death of each leaf provides a home for animals rarely seen.

People mourn in different ways, but wouldn’t it be wonderful if there was a day that everyone — regardless of how they mourn — was given permission to do so? One day to remember the dead and who they were, what they meant, what they brought to your life. One day to let them fill you again with laughter, love, and comfort. One day to acknowledge that they will always be dead and you will carry the grief with you until you, too, die. It could be the one universal celebration of the one thing that awaits us all – death.

Back to the natural side of things, all those brilliantly colored leaves that fall to the ground, they are indeed dead. But through their death, they regenerate the forest floor, provide winter shelter and sustenance to millions upon millions of living things. Mammals gather those leaves to line their burrows and protect them from the bite of cold; death helping to guard against death. Countless species rely on this annual accumulation of death, the release of life no longer needed, to keep them alive and safe. Without death, much couldn’t live.

Death of the year’s growth allows the microfauna to thrive all winter, busily feasting and decomposing beneath the snow. This feasting on leaves and plants stems and animal bodies returns the energy of life to the tomb of dormancy, which returns to life with the rising of the spring sun. Seeds will tap into the rich humus of autumns past to push through the blanket of leaves and sprout anew in April’s light and warmth. Insect larvae will emerge from winter cases to fly upon warm spring breezes because death has sustained them through the darkest times.

Even now, as always, humans are part of this dance, surrounded by the death that so many fear, but is actually what, in fact, nourishes us. We eat vegetables and meat (dead things) to keep us healthy over the winter and throughout the year. We burn wood or petroleum products (dead things and really, really, really old dead things) to keep us warm. We make clothes from (dead) plant fibers, (sometimes, but not always dead) animal products, and petroleum products (once again, really old dead things). I’m sure you get the idea.

I guess what I want to share is that death is one of the most natural processes in the world. The living need death to continue living. Acknowledging that, accepting that, is healing, freeing. As we enter a time that many call depressing, dark, and torture, take a bit of time to look inward, face some fears, and have an honest look at how death sustains you and the life around you.

Leaves are gathered by many animals to make their homes warm for winter.

Regardless of race, religion, attitude, politics, origin, location, or occupation, death unites us as living things connected to a force we all share, are all a part of, and to which we will all succumb. Let’s celebrate that! With all the joy of a four-year-old and their dog jumping into in a pile of the crunchiest, most colorful autumn leaves, let us celebrate this season, this life, and the death that makes it all possible.

Complete Article HERE!

What Happens When an Animal Dies at the National Zoo?

Dealing with death is part of the job.

Luke, the African Lion, who died on Oct. 19.

By

With roughly 2,000 animals in the care of the National Zoo, dealing with the end of life is an inevitable part of the job, and these last few months saw several notable deaths.

Luke, a 17-year-old African lion, died on Oct. 19; Naba, an 18-year-old African lion, died on Sept. 26; and Calli, a 17-year-old California sea lion, died on Sept. 7. While counts obviously ebb and flow year by year, the zoo (using data from the past three years and including small animals like fish) estimates that it loses about 200 animals annually.

But while we get to see how the critters celebrate their birthdays and even holidays (hint: it often involves elaborate species-friendly treats), their deaths are more of a mystery. Is there a funeral? A secret animal graveyard somewhere?

Well, no and no.

While zookeepers are human and certainly mourn the loss of their “coworkers”—the zoo even maintains a relationship with a local animal grief counselor—they are also biologists. And in death, there’s a window for research.

Consequently, just about every animal that dies in the care of the zoo, whether from euthanasia or on its own, is immediately sent to the zoo’s pathology lab for a necropsy—the equivalent of a human autopsy.

“All organs are evaluated, all joints are evaluated, diagnostic samples are taken, maybe even beyond what we took when the animal was alive,” says Don Neiffer, chief veterinarian for the National Zoo. “The samples are then frozen for future evaluation and research that could benefit conservation. Tissues also go out for something called histopathology,” or the microscopic study of disease.

According to Neiffer, the zoo has tissue samples of nearly every animal there since the ’70s—including a few species that are now extinct.

Any resulting information is then shared across the industry, providing useful data to researchers who may be studying a niche health issue within a certain species that they normally wouldn’t have access to. “In death, we utilize these animals to help improve the lives for the others they left behind,” says Neiffer.

For example, when the first baby Asian elephant born at the zoo unexpectedly died in 1995, its necropsy led to the discovery of a previously unidentified herpesvirus in elephants. “Basically, it was the wellspring for elephant herpes virus research, diagnostics, treatment, and hopefully an eventual cure,” says Neiffer.

Veterinary technician Hannah Sylvester works with elephant blood samples, extracting DNA, as part of elephant herpesviruses research.

Even local wildlife, like squirrels that wander onto the zoo’s campus and die, undergo necropsies.

“Because of our collection, we want to do surveillance,” said Neiffer. “If [dead wildlife] comes to us, we do at least minimal gross dissection, but oftentimes we do diagnostics. We’re looking at any issues that could concern our team or animals,” such as rabies or Avian influenza. Likewise, the zoo shares this data with local wildlife departments.

Afterward, leftover parts of the animal—think a shell from a tortoise or the skeleton of a cheetah—might go to a museum or education center. In fact, the National Museum of Natural History has several skeletons from the zoo in its collection.

Anything remaining will be cremated, including even the tiniest of animals. “Everything from guppies to elephants is incinerated,” says Neiffer.

While burials were once commonplace at zoos, very few bury their animals anymore. One reason for that: “You don’t want illicit wildlife parts ending up in anybody’s hands,” says Neiffer.

Of course, underlying all these scientific processes is the emotional side of death, too. “Anyone who has a good understanding of how much we love these animals and care for them can understand how difficult end of life care is,” says Brandie Smith, the zoo’s director. “But also, these are professionals. These are people who train their entire career to do this.”

With so many of the animals living past their species’ mortality rates in the wild, the zoo’s workers must regularly confront a heart-wrenching question: if and when to euthanize a terminally ill animal. The zoo keeps a detailed chart, tracking the animal’s quality of life‚ marking whether it’s still eating, staying active, and socializing. When it becomes clear that the “animal is suffering beyond what’s reasonable,” then it’s time.

“It’s hard on us, but we take on that burden as zookeepers,” says Neiffer. “It’s our onus and our responsibility to provide the animals with that peaceful passage to the next plane. When we can remove [their suffering], we’ve given them that last gift.”

Still, it’s always hard to say goodbye, which is why the zoo provides its keepers a final moment with the animal before euthanasia. Even particularly social species, like elephants and great apes, receive a moment to acknowledge the death of their habitat mate (assuming it died from a noninfectious cause). 

While there’s ultimately no funeral or ceremony, there are sympathy cards. The public often sends in memories they had of an animal, drawings from children, and well wishes for staff, says Smith. In the case of a panda cub that lived only for a few days, Smith says “the outpouring of sympathy and grief from the public was really powerful.”

Then, as with all things, life goes on.

“Animal keepers as a whole are an incredibly stoic group of people and they’re good at grieving with one another—but they also have a job to do,” says Smith. “There are other animals to take care of. It’s part of the cycle they have been trained for.”

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.