Month: November 2022

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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↩!

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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↩!

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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↩!

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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↩!

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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.

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End-of-life Planning

— Why to Start Young

You’re too busy and alive to think about death when you’re young. “It always seems too early, until it’s too late,” declared the National Healthcare Decisions Day a few years ago. You want medical insurance for a sudden illness or injury. You ask our employer and government to offer retirement benefits to retire well. What about your hope to die well? Although you can’t control your future, you can plan for it.

By Sharleen Lucas, RN

End-of-life planning – also known as advance care planning – gives you a powerful voice if illness or injury leaves you unable to speak for yourself.

Hard to imagine, right? A day when an illness or injury steals your ability to make decisions for yourself. When you’re young and buzzing through your days of hard work and fun, death is an abstract, nebulous, and distant concern. Until a pandemic hits. Or you walk away from a nearly fatal motorcycle accident. Or your first child is born. Suddenly, death creeps closer and these moments make you think a little harder about life and death.

In 2020 according to the Centers for Disease Control and Prevention, unintentional injury was the leading cause of death for 15 – 44-year-old Americans. No one knows what tomorrow brings, as the old saying goes.

But wait, isn’t thinking about death harmful to young people?

There’s no getting around it. When you plan for end-of-life care, you have to think about death.

I asked palliative care psychologist Dr. Dwain Fehon if it’s mentally healthy for young people to complete advance directives. As Associate Professor, Chief Psychologist, and Director of the Behavior Medicine Service for the Yale School of Medicine and Yale New Haven Hospital, Dr. Fehon has worked with countless patients of all ages facing mental and terminal illnesses.

His answers were enlightening. “When we can talk openly about difficult topics early in life, it’s just so healthy and helpful,” he expressed in his soft, kind voice. “It allows you to formulate ideas and to take in the thoughts and opinions of others so that you’re not alone or isolated with your thoughts or fears.”

There’s certainly evidence to support his words. When it’s explained correctly, most younger people want to talk about end-of-life issues.

In 2022, the American Journal of Hospice and Palliative Care published a study of young people’s perspectives on end-of-life planning. The researchers talked with 30 white and Black participants. They found that 87% of them were comfortable talking about the subject and wanted to make their own end-of-life decisions. Even though the sample size was small, this research is consistent with other studies.

A study published in 2019 found that young adults welcomed the chance to discuss advanced care planning. They even wanted more information about it. Researchers found a significant improvement in their “self-perception of comfort, confidence, certainty, and knowledge” about death planning. They recommended more end-of-life talks with young people.

When you’re in your 20s and 30s, paving your path and making your own choices are top values. Planning for death empowers you to voice your opinion about the medical care you want if you can’t speak for yourself.

In 2015 researchers published findings from their end-of-life discussions with 56 young people between the ages of 18-30. They found each subject felt death planning was a valuable way to express their individuality. They also liked that advanced care plans can change and grow as they did.

Surprisingly, most young and healthy people are willing and even eager to talk about death planning.

“It’s interesting, thinking about death gets you thinking about life. There’s value in thinking about these things, and when we can think about it, it helps to reinforce a general acceptance within ourselves that death is a part of life. And it’s okay to talk about. It’s not a taboo topic that needs to be kept quiet.” — Dr. Fehon

His words reminded me of the young, healthy mortician Caitlyn Doughty, who founded the Death Positive Movement in 2011. Her goal is to help people of all ages break their silence about death. Topics kept in the dark create more confusion, robbing people of their power to understand the issue and make their own choices about it.

Death planning is actually about life

Dr. Fehon’s wisdom here continues. “In the palliative care world, we have a concept called double awareness,” he told me. “One component is life engagement, and the other component is death contemplation. The idea is to hold these two concepts in our lives. We can contemplate death and still be engaged in life.”

The lightbulb lit up in my head. Death contemplation can engage us deeper into life. This is why many young people like it. The young participants in these studies had the chance to clarify what they want from life now and in the future.

But if we think about end-of-life plans and find ourselves disengaging from life, something’s wrong. We may be overly preoccupied with dark fears or sadness about death. In these bleak moments, we’re likely isolating ourselves from loved ones or others who can help us with the process.

End-of-life planning is a process that involves your loved ones. They need to know what decisions you’d like them to make if you can no longer speak for yourself. So, no one should go through the process alone.

Alright, I’m convinced. But how do I start end-of-life planning?

We can sum up the process into three steps.

  1. Complete your advance directives and make them legal.
  2. Post them openly in your home and give them to loved ones and your doctors.
  3. Talk about them with your health proxy, your loved ones, and your medical team.

What are advance directives?

Advance directives are the documents that make your choices legal. These documents include a living will and a power of attorney for health care.

A living will describe the type of end-of-life medical care you want in certain situations. It directs and guides your chosen decision-maker and medical team to make decisions for you. Your instructions in the living will, can be as creative as you want.

These directives are kind to your family. Instead of agonizing over medical decisions without your input, they can more confidently and peacefully make the right decisions for you.

A power of attorney for health care legally names the person you want to make your healthcare decisions when you cannot. This decision-maker is also called a health proxy. They become your voice when you can’t speak for yourself.

Your advance directives are yours to define and only become active when you are suddenly, by illness or injury, unable to make your own decisions.

Where do I get the paperwork?

For a paper copy, start with your doctor’s office or the closest hospital. They often stock advance care paperwork that meets your state’s standards.

Not surprising, there are many online options to suit your needs. These sites are a great place to start because they help you think about your end-of-life wishes and answer a lot of questions. Some are free, and some cost as little as five dollars. You can get trustworthy free documents at CaringInfo, MyDirectives, and Prepare for Your Care.

But these details only scratch the surface. Planning can feel overwhelming, but don’t let that stop you. Push through for the sake of your life now. For the sake of your loved ones.

If it gets hard to talk about or feels too complicated, consider talking with a local palliative care social worker or chaplain. End-of-life doulas also help people safely talk about death and advance care plans.

Remember, death planning is about life. Let these words from Dr. Fehon guide you. “What does living well mean now [to you]? Whatever your circumstances, whether you’re healthy or not, [end-of-life planning] is a recognition of what’s important and to try to live in a way that is in alignment with your values, your priorities authentically.”

Complete Article ↪HERE↩!

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How Psychedelics Can Transform End-of-Life Care

By Shoshana Ungerleider and Barbara Hansen

If you’re on TikTok or Instagram, you may have encountered one of nurse Julie McFadden’s viral videos about all things death and dying. Hospice Nurse Julie, as she’s known, shares just how beautiful and difficult dying can be, and has a thing or two to say about how we can make things better for the many people who suffer unnecessarily at the end of life.

“Sometimes no matter what we do, it’s not enough. Despite how hard we try to control symptoms for patients so they can have a good quality of life toward the end of their lives, they and their families still suffer,” McFadden said when we reached out to her recently. “We don’t always know why the medicine we give patients for pain, anxiety, or agitation isn’t working. If there could be a better way to treat people where they can still enjoy their loved ones at the end of life, then why not use it?” McFadden asks.

One of us is a nurse and one of us is a physician, so we know the terror and pain those at end of life can face. We’ve come to believe that the careful administration of psychedelic treatments can make a huge difference in a person’s end-of-life experience. Dying well may not be on the minds of voters in Colorado right now, but it should be on Tuesday, when the state will vote on a ballot initiative determining whether to legalize psychedelic mushrooms.

More than two dozen other states and the U.S. House of Representatives are also grappling with their own versions of psychedelic legislation. Colorado may end up following in the footsteps of Oregon. In 2020, Oregon voters approved Ballot Measure 109 and became the first state in the country to allow the use of psilocybin to treat chronic mental health issues like PTSD and depression. Measure 109 is the country’s first chance to create a model for psychedelic treatment for a variety of mental health conditions. Oregon will launch its state-licensed psilocybin services program in 2023, and the way it addresses access, equity, and safety will inform what happens next in other states and countries. (One of us, Barbara, is a member of the Oregon Psilocybin Services Advisory Board.) While Measure 109 doesn’t limit itself by specifying conditions that can be treated with psilocybin, therapists and health care providers plan to recommend its use to treat depression, PTSD, and anxiety, and to help people kick addictions.

They also plan to use it to reduce anxiety for patients at the end of life. From the start, researchers have been curious about how psychedelics might affect people who are dying. An early study on psychedelics in the 1970s at Johns Hopkins University, inspired by a terminal illness diagnosis received by one of the staff nurses, focused on the potential to use LSD to treat psychological and existential distress in cancer patients. Several other studies on psychedelics in end-of-life care followed, and the research has resumed in the last decade or so—all to good effect.

We have both worked with patients who struggle with deep existential, spiritual, and practical questions about their deaths: When will it happen? How much pain will there be? What happens after I die? How will my loved ones bear my being gone? Some find peace toward the end, but others experience mental and physical symptoms of profound anxiety, depression, agitation, and more. To treat these symptoms, we have only a handful of tools—opiates, antidepressants, and sometimes, unfortunately, palliative sedation.

“When we’ve tried everything and we can’t get the person comfortable, when we are not expecting them to be comfortable and awake, our last resort is palliative sedation. But they don’t have any quality of life with that. … The goal for hospice is not to put someone to sleep until they die,” said McFadden.

The human body and brain undergo a series of profound changes over the course of dying. Some of these, like elevated anxiety and agitation, can be difficult for the patient, family members, and caregivers. In the most extreme cases, our only recourse as health care providers is palliative sedation, which, as McFadden described, is essentially putting a person into an induced coma through to their death. This option can be a heartbreaking loss for the patient and family members who are deprived of any more meaningful interaction and can also cause tremendous moral distress for the clinicians involved. Having more therapeutic options available that can significantly reduce end-of-life distress without numbing or sedating the patient would be absolutely transformative for the field of medicine.

By contrast, based on several recent clinical trials, there is evidence that a single treatment with psilocybin produces lasting and significant reduction in anxiety and depression for people with a terminal diagnosis. The data to date show that using psilocybin in a controlled therapeutic environment decreases death anxiety and increases optimism and quality of life for people near the end of life.

The end of life is not only a universal experience, we also know it’s one where psychedelic medicines can spur a massive paradigm shift in how we provide care.

Oregon’s Measure 109 gave us a start. But some counties and cities in Oregon have put psychedelics back on the ballot this Election Day, pointing to a need for more public education about the benefits of psychedelic-assisted therapy, and more clarity on how these programs will work. Colorado’s ballot measure has the potential to move things much further. We hope that future legislation might more directly address the unique needs of those at the end of life. Some patients may not be able to travel to a service center or may have health care providers who are afraid to recommend the use of psilocybin. Others may not be able to afford to pay for psilocybin sessions out of pocket, since insurance coverage is still unknown. These details matter—pushing to get them included in legislation up front will speed up the ability of clinicians and therapists to provide psychedelic-assisted care for those at the end of life upon the adoption of new laws.

We’re on the verge of a transformation in end-of-life care that will touch us all, in some way, and voters in Colorado have a unique opportunity to help shape the future. From legislation to implementation and public conversation, it’s time to take a serious look at how psychedelic medicines can reframe our relationship with living and dying. Of course, it’s also time to vote.

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