Month: September 2020

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How California doctors are fixing how we die

Doctors change life-ending drugs to ease the final hours

Dr. Lonny Shavelson

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Modern medicine excels in ways to save a beating heart.

Yet hardly anything is known about how to humanely stop one.

Frustrated by the dearth of information about how to aid dying, Berkeley’s Dr. Lonny Shavelson is gathering data to guide other physicians through this new, important and sorrowful clinical frontier. Legalized in 2015, California’s End of Life Option Act allows doctors to prescribe life-ending drugs to terminally ill patients.

“We’re doing a medical procedure. And whatever is done in medicine should be done well, and consistently,” said Shavelson, 68, a UC San Francisco-educated former Emergency Room physician.

“Now we can tell patients: ‘We’re giving you the best protocol we have,’ ” said Shavelson, whose Bay Area End of Life Options medical practice has overseen 232 deaths. “And we’re getting better and better.”

When Californians passed the medical aid-in-dying law – inspired by Oakland’s Brittany Maynard, San Mateo’s Jennifer Glass and others who sought to end their suffering from cancer – voters assumed it promised them a neat Shakespearean-styled ending, like Romeo’s quick poisoning in Verona. That was the goal, but it didn’t always happen.

A little-known secret, not publicized by advocates of aid-in-dying, was that while most deaths were speedy, others were very slow. Some patients lingered for six or nine hours; a few, more than three days. No one knew why, or what needed to change.

“The public thinks that you take a pill and you’re done,” said Dr. Gary Pasternak, chief medical officer of Mission Hospice in San Mateo. “But it’s more complicated than that.”

So Shavelson, in collaboration with Washington-based retired anesthesiologist Dr. Carol Parrot, set out to compile data to help doctors help their patients. At a UC Berkeley-based conference last February, they co-founded the American Clinicians Academy on Medical Aid in Dying. The Academy’s 240 clinicians are now contributing and sharing their own experiences.

Dr. Lonny Shavelson, of Bay Area End of Life Options, looks over data at his home office in Berkeley, Calif., on Tuesday, Feb. 18, 2020. Shavelson is leading a data collection project to learn what medications most quickly and gently bring the person to their requested death under the 2016 End of Life Options Act.

To each deathbed, seated with grieving family members, Shavelson brings a clipboard with drug names and dosage levels.

As minutes tick by, he measures falling oxygen levels, slowing cardiac rhythms and fading respiration. He tracks outcomes while providing care.

The pharmacologic findings, shared with clinicians nationwide, are dramatically reducing the incidence of long, lingering and wrenching deaths.

“It’s really helpful to have someone actually studying the utility of what it is we’re doing,” said Pasternak. “So much of what we’re doing has arisen empirically. He’s collected such great data.”

“Patients want a medication that is effective. They want a swift, peaceful death,” he said.

Using the initial drug regimen in place when the law was passed, 34% of all patients took longer than two hours to die; one man died after 11 hours. A second regimen reduced that to 20%. With the current protocol, fewer than 10% of patients take longer than two hours to die, and most patients die in 1.1 hours, on average.

The protracted deaths didn’t create suffering for patients; they are in a deep coma. But the lengthy vigils can be agonizing for loved ones.

“After two hours, people were starting to get concerned, and restless,” Shavelson said. They wonder what’s happening. People start walking around the room, going into the kitchen. It disrupts the meditative mood. Between two and four hours – that’s not ideal. Anything over four hours we consider to be problematic.”

“I was looking at what was happening and thinking: ‘This isn’t as good as it’s been hyped up to be,’ ” he said.

There’s no repository of information to help doctors in states that have passed aid-in-dying laws, representing 22% of the U.S. population. The U.S. National Institutes of Health won’t fund the research. Medical schools don’t teach it. Hospitals don’t oversee it. Without that official support, medical journals won’t publish any findings.

Traditional medical research is conducted at universities and medical schools, “and they won’t touch the topic,” said Shavelson. “They’ve completely abrogated their responsibility to patients who are dying … bowing out of their traditional role of teaching, research and providing quality care. It’s taboo. There’s still a stigma.”

When aid-in-dying was first passed in Oregon in 1997, patients were given secobarbital, sold under the brand name Seconal. It induces deep sleep, then a coma that is so deep that the brain no longer drives respiration.

But that drug wasn’t consistently quick. Then it became prohibitively expensive, finally unavailable.

To replace Seconal, the doctors invented a three-drug cocktail — a painkiller, sedative and a heart-slowing agent — based on their experiences with overdose deaths. They later added another cardiac drug. But problems remained.

While sitting at the bedsides of several six-hour deaths, Shavelson pondered what was going wrong. He speculated that one cardiac drug was rendered ineffective by the large quantities of the other drugs. So he separated that out and gave it earlier, so it had time to act.

When some delays persisted, he replaced one of the heart-slowing drugs for a heart-damaging drug.

Based on newly compiled data from Academy clinicians, the formula is about to be improved again, pending confirmation of results.

Shavelson and Parrot have identified which patients are more likely to linger, and can recommend adjustments. People with gastrointestinal cancer, for example, don’t absorb the drugs as well. Former opiate users often have resistance to some of the drugs. Young people and athletes tend to have stronger hearts and can survive longer with low respiration rates.

“We’re learning. Hypothesis, data and confirmation. This is what science is,” he said. “Our job is to stop the heart; that’s what they want us to do.

“We haven’t made it less sad. It’s still death. There’s tears and crying,” he said. “But it’s a better ending.”

Complete Article ↪HERE↩!

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Talking to your child about death

You need not worry excessively about what to say. According to one study, children just want to “hear the truth expressed in kind words.”

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Death is often a sore subject and one that adults like to avoid talking about. But because it is inevitable, at some point we are going to have to talk to our children about it.

Sometimes their own curiosity may force us to broach the subject, like when your six-year-old child innocently asks if you’re going to die someday. What would your response be? Would you try to invent something in order to spare them any worry or would you tell them the truth in a way that they would understand? While most parents find it difficult to talk about death and dying with their children, the best way to go is by telling them the truth in a way they best comprehend.

In fact, children do think about death. Some even play games in which someone pretends to die. Therefore, death should not be considered a taboo subject, and you should welcome any questions your child may have about it. By occasionally talking openly about death, you help your child learn how to cope with the loss of a loved one.

Talking about death will not cause your child to have morbid thoughts. Rather, it will help him or her alleviate their fears. However, you may need to correct some misunderstandings. For example, some experts say that many children under the age of six do not view death as final. In their games, a child will be “dead” one moment and “alive” the next.

When they get a little older, however, children begin to grasp the seriousness of death—a fact that may cause them to have questions, concerns, or even fears, especially if a loved one has died. Therefore, it is vital that you discuss the subject. Several mental-health experts believe that a child will develop anxieties related to death if he or she feels that they are not allowed to talk about this subject at home.

Here are some tips to guide you when the subject pops up:

Take advantage of opportunities to talk about death: If your child sees a dead bird on the side of the road or if a beloved pet dies, use simple questions to encourage him to talk. For example, you could ask: “Does a dead animal suffer? Is it cold or hungry? How do you know that an animal or a person is dead?”

Do not hide the truth: When an acquaintance or a relative has died, avoid using confusing euphemisms such as “He has gone away.” Your child might wrongly conclude that the deceased will soon return home. Instead, use simple and direct words. For example, you might say: “When Grandma died, her body stopped working. We can’t talk to her, but we will never forget her.”

Reassure your child: He or she might think that their actions or thoughts caused someone’s death. Instead of just saying that they are not responsible for what happened, you could ask, “What makes you think that it is your fault?” Listen carefully, without belittling their feelings. Also, since a young child might think that death is contagious, assure them that it is not so.

Draw out your child: Talk freely about loved ones who have died, including relatives whom your child has never met. You might evoke fond memories of an aunt, an uncle, or a grandparent and relate amusing anecdotes. When you openly discuss such people, you help your child understand that they need not avoid talking or thinking about them. At the same time, do not force your child to talk. You can always broach the subject later, when you feel the time is right.

You need not worry excessively about what to say. According to one study, children just want to “hear the truth expressed in kind words.” Be assured that a child will usually not ask a question unless he or she is ready to hear the answer.

Complete Article ↪HERE↩!

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At 31, I have just weeks to live. Here’s what I want to pass on

Now that there’s no longer any way to treat my cancer, I’ve been reflecting on what I want others to know about life and death

‘I have come to see growing old as a privilege. Nobody should lament getting one year older, another grey hair or a wrinkle. Be pleased that you’ve made it.’

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At the beginning of April I wrote a piece for the Guardian. If you haven’t read it, the headline pretty much sums it up: “Terminal cancer means I won’t see the other side of lockdown”. Given the pandemic and the announcement of shielding for vulnerable people, I thought I wouldn’t be able to live out my last few months in the way I’d imagined. It seemed like I would be stuck alone, with no light at the end of the tunnel, and without the comfort of friends or family.

Five months on, I’m still here, but much has changed. Thankfully, the experience wasn’t as bleak as you might think. During the first few weeks of lockdown I found I was floating nicely through the time by staying occupied and upbeat. In many ways, you can’t beat the liberation of being able to wake up when you feel like it, having few plans set in stone and being able to do whatever you want with the time you have.

Over the past couple of months, though, my energy levels have dropped, and I have started doing less. I look drastically different. I have lost a lot of weight. A 20-minute coughing fit is now part of my morning routine while my chest tries to settle itself. It’s nothing that some steroids, morphine, an iced drink to settle my throat and time spent dry-heaving in front of a bucket won’t eventually sort out, but it can get really distressing – like an intrinsic panic response.

At points I was really struggling. The loneliness of Covid was making me miserable, and I needed company. But my sister came to the rescue at just the right moment. She moved back into our shared flat at the end of June. It made a huge difference, and I don’t know where I would be without her. After months of isolation, having a family member close by changed everything.

At the same time, out of the blue, I was told I was finally suitable for a drug trial that had been dangled in front of me for more than a year. The oncologists made it very clear that this would not be a “magic bullet”, and the goal would be to extend life by a few months. The aim of the treatment would be to stop the cancer stealing all the nutrients and energy my body needs.

But I was not in the same good shape I had been in at the beginning of other treatments; I was extremely short of breath, unable to exercise and felt lethargic. And after pinning my hopes on the idea of a drug trial for so long, it took just over a week for it to batter me. My days involved moving from my room to the sofa, feeling like I had flu and struggling with mental fog. Almost immediately I realised I just couldn’t do it. Life for me is about living, not just clocking up the years. And this drug made living almost impossible.

I realised I had to finally accept the inevitable: that there was no treatment. I thought this mindset would leave me feeling completely liberated. I was wrong. With nothing left to fight, it really was just a question of waiting. The battle became emotional and mental. It has forced me to reflect.

The first three decades of my life were pretty standard. Well, actually they were awesome, and everything was going pretty perfectly with regards to work, health, relationships and friends. I had plans for the future, too: learn some Spanish, see more of central America, and get a bit more out of it with some volunteering too.

Elliot with his sister at Lulworth Cove, Dorset.

I imagined settling down in my 30s or 40s with kids, a mortgage and so on. Or maybe I wouldn’t. Maybe my friends’ children would call me Uncle Elliot as their parents gathered in the kitchen looking slightly concerned about their single 45-year-old friend about to set off travelling around Mongolia. Either way, growing older with my mates and living my life to the full was always my ambition.

Of course, the second part of this storyline won’t be written now. It’s a shame I don’t get to see what happens. But everybody dies, and there will always be places and experiences missing from anyone’s life – the world has too much beauty and adventure for one person to see. I will miss marriage or children, blossoming careers and lives moving on. But I’m not alone in my life being cut short, and I think my time has been pretty good.

At this point I should say a word to my friends. Being this ill complicates all relationships. The rut I found myself in a few weeks back hasn’t lifted. I’ve definitely been “feeling the victim” a lot more than usual. My acceptance that my time and energy is now limited comes with the knowledge that I won’t be able to catch you all properly to give our relationships the time and appreciation they deserve. I get so many messages from you all, which often exceed the energy I have to reply. Where I am able to see people, I’d just say keeping me company and being positive is helpful. I want fun, laughter, happiness, joy. I think it’s very possible to have this kind of death – there is likely to be a shadow of sadness hanging over proceedings, but for the most part I want everyone relaxed and to be able to feel the love.

Because I know that that moment isn’t too far away. I haven’t asked for a specific prognosis, as I don’t believe there’s much to gain from doing so, but I think it’s a matter of weeks. Medicine has luckily turned this into quite a gentle process. That really does take a lot of the fear away. And I’m hoping impending death now grants me the licence to sound prematurely wise and overly grandiose. Because I’ve had time to think about the things that are really important to me, and I want to share what I’ve discovered.

First, the importance of gratitude. During my worst moments – the shock of cancer diagnosis, the mental lows and debilitating symptoms of chemotherapy – it was difficult to picture any future moments of joy, closeness or love. Even so, at those times I found comfort in remembering what I have: an amazing family, the friends I’ve made and times I’ve shared with them, the privilege of the life I’ve had.

Second, a life, if lived well, is long enough. This can mean different things to different people. It might mean travel. I’ve had the good fortune to be able do this, and can confirm that the world is a wonderful place full of moments of awe and amazement – soak up as much as you can. It may mean staying active, as much as possible – the human body is a wonderful thing. You only appreciate this when it starts to fail you. So when you find yourself slipping into autopilot, catch yourself, and take simple pleasure in movement, if you can. Look after your body because it’s the only one you have, and it’s bloody brilliant. Knowing that my life was going to be cut short has also changed my perspective on ageing. Most people assume they will live into old age. I have come to see growing old as a privilege. Nobody should lament getting one year older, another grey hair or a wrinkle. Instead, be pleased that you’ve made it. If you feel like you haven’t made the most of your last year, try to use your next one better.

Third, it’s important to let yourself be vulnerable and connect to others. We live in a society that prizes capability and independence, two things that cancer often slowly strips away from you. This was naturally a very difficult pill to swallow for a healthy, able late-twentysomething male, but having to allow myself to be vulnerable and accept help has given me the best two years of my life, which was pretty inconceivable at the time of diagnosis. Vulnerability has shown me what phenomenal people my sister and parents are – words can’t do justice to how much they have done for me. The same applies to my friends – what better way is there to spend two years than being surrounded regularly and closely by these people?

Fourth, do something for others. Against the backdrop of Covid-19, Black Lives Matter and the desperate attempts of migrants to cross the Channel, my thoughts really turned to those who have not had my privilege – whether that’s by virtue of socioeconomics, ethnicity or the country I was born in. I always try to remind myself of this.
Fifth, protect the planet – I can’t leave this off because it’s so important. I’ll be gone soon, but humanity will still be faced with the huge challenge of reducing carbon emissions and saving habitats from destruction. In my time here, I’ve been lucky enough to see some natural wonders and understand how precious they are. Hopefully future generations will be able to say the same. But it will take a massive collective effort.

If you asked me what I’d want to leave behind, it would be a new awareness of these things among my friends – and anyone who’ll listen, really. I was astonished by the number of people that responded to my article in April. I now find myself in a position where people are asking me how they can help or what they can do that would make me happy. Apart from the obvious – looking after each other once I’ve gone – I’m going to push for people to give, be that money or time. I’ve already had so many people ask which causes I recommend, and there are loads, but I’d say any that align with the values I’ve sketched out above would have my blessing. Among friends and family there is talk of setting up a small charity in my memory.

Despite some very low times, it’s worth repeating that the period since being diagnosed has been made not just bearable but actually fantastic. I’ve had new experiences that haven’t seemed tainted by cancer – and those experiences were, as always, much better shared. In a situation that is pretty new for most of my loved ones and friends (I am yet to meet anyone I grew up with who has had to deal with cancer or a similar chronic illness at my age), it has been amazing watching them all rise to the challenge. I’m not sure if it’s just that I know a high proportion of amazing people (possible) or if most human beings have this capacity for connecting and recognising what’s truly important (very likely).

After the gut-punch of cancer diagnosis, I’ve really struggled to define a purpose for my own life. I found in time this came naturally. Life is for enjoyment. Make of it what you can.

Complete Article ↪HERE↩!

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Patients with COVID-19 shouldn’t have to die alone.

Here’s how a loved one could be there at the end

By &

While the number of new COVID-19 cases in Victoria continues to trend downwards, we’re still seeing a significant number of deaths from the disease.

The ongoing outbreaks in aged care, and the fact community transmission is continuing to occur, mean it’s likely there will be many more deaths to come.

As a result of strict infection control measures restricting hospital visitors, tragically, many people who have died from COVID-19 have died alone. Family members have missed out on the opportunity to provide comfort to the dying person, to sit with them at their bedside, and to say goodbye.

But it doesn’t have to be this way. We have cause to consider whether perhaps we could do more to preserve the patient-family connection at the end of life.

Who can visit?

There’s some variation between Victorian health-care facilities in how visitor restrictions are applied. Some allow visitors to enter hospitals for compassionate reasons, such as when a person is dying. But visitors are not permitted for patients with suspected or confirmed COVID-19.

The latest figures show 20 Victorians are in an intensive care unit (ICU) with 13 on a ventilator. This indicates their situation is critical.

Despite hospitals, and particularly ICUs, being adequately prepared and resourced to provide high-level care for people diagnosed with COVID-19, patients will still die.

Family-centred care at the end of life in intensive care is a core feature of nursing care. So in the face of this unprecedented global pandemic, we realised we needed to navigate the rules and restrictions associated with infection prevention and control and find a way to allow families to say goodbye.

Our recommendations

We’ve published a set of practice recommendations to guide critical care nurses in facilitating next-of-kin visits to patients dying from COVID-19 in ICUs. The Australian College of Critical Care Nurses and the Australasian College for Infection Prevention and Control have jointly endorsed this position statement.

The recommendations are evidence-based, reflecting current infection prevention and control directives, and provide step-by-step instructions for facilitating a family visit.

Some of the key recommendations include:

  • family visits should be limited to one person — the next-of-kin — and that person should be well
  • the visitor must be able to drive directly to and from the hospital to limit exposure to others
  • they should dress in single-layer clothing suitable for hot machine wash after the visit, remove jewellery, and carry as few valuables as possible
  • on arrival, staff should prepare the visitor for what they will see when they enter, what they may do, and what they may not do (for example, it would be OK to touch your loved one with a gloved hand)
  • a staff member trained in the use of personal protective equipment (PPE) should assist the visitor to put on PPE (a gown, surgical mask, goggles and gloves) and after the visit, to take it off, dispose of it safely and wash their hands
  • where possible, the visitor should be given time alone with their loved one, with instructions on how to seek staff assistance if necessary.

We also highlight the importance of intensive care staff ensuring emotional support is provided to the family member during and immediately after the visit.

Tailoring the guidance

It’s too early to know the full impact a loved one’s isolated death during COVID-19 may have on next-of-kin and extended family. But the effect is likely to be profound, extending beyond the immediate grief and complicating the bereavement process.

These recommendations are not meant to be prescriptive, nor can they be applied in every circumstance or intensive care setting.

We encourage intensive care teams to consider what will work for their unit and team. This may include considerations such as:

  • whether there are adequate facilities in which the visitor can be briefed and don PPE
  • whether social distancing is possible with current unit occupancy and staffing
  • whether an appropriately skilled clinician is available to coordinate and manage the family visit
  • each patient’s unique clinical and social situation.

Rather than just using a risk-minimisation approach to managing COVID-19, there’s scope for some flexibility and creativity in addressing family needs at the end of life.

Complete Article ↪HERE↩!

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I want my hair to be fully gray.

The lives of Black folks should end with dignity

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As a Black man, these past few months I have thought a lot about dying. More than usual.

When I was young, I imagined a death where I learn that I have an incurable disease and then begin my final, glorious lap around.

The end comes in the company of family and friends and a final touch of a loving hand before my last breath. The end, in some way, resembles the very beginning of life — swaddled, surrounded by love, care and attention to every breath. There is something sacred about that first breath, the last and all in between.

When I was in college, I read about death and dying, which Emerson described as being “kind” and Socrates described as “like a dreamless sleep.” I learned that death is sacred and is a counterpart to birth. Buddhists prepare for death, because it can happen at any time — breathing is the most cherished gift of nature.

I loved my college courses. I have taught my share as well. Every time I would return home from college and enter Grace Temple Baptist Church in California with my mother, I was in the presence of people who knew things. They knew, to quote James Baldwin, rivers “ancient as the world and older than the flow of human blood in human veins.” They knew about death and dignity, especially those who grew to be old.

I have lived long enough to know there is no promise that the end of my life will be the one I hope for — a time that involves a rocking chair and a grandchild on my knee; stories about the 50-pound trout that I caught in Lake Washington; the basketball game where I sang the national anthem and went on to score 75 points, including the winning basket; endless magic tricks.

I want to fall asleep at the dinner table but not before saying embarrassing things. I want to be seen as having wisdom worth sharing. I want my hair to be fully gray. I want to be called distinguished every now and again and crazy most often. I don’t need much praise and will settle for forgiveness for the times I’ve come up short. I want to tell stories about the 70s. I want to pass down my Marvin Gaye and Supremes vinyl. I want to tell the kids, “Lemme show you how the ‘Soul Train’ dancers busted a move in the day.”

When I would return home to visit my mother in California, there were fewer and fewer Black men in her church. One year, the men’s choir had become a trio. I know the life expectancy data for Black men, many who have suffered quietly. I know the price of things, which is why I lie awake at night out of the “reach of warm milk.” I know that I’ll be fine but not okay. My father held his grandson, my son, once, for a moment. He never met his granddaughter. I pass on my father’s fishing and military stories as best I can.

I think about death more now because I want to live well. I do not want my life to be something I beg for. I do not want to plead for my last breath under an officer’s knee. I do not want to run from a bullet. I do not want my final moments to be recorded by a stranger with a cell phone, a video that goes viral. I do not want my nurse to be in a biohazard suit. I want my last breath, my brother’s last breath, my son’s last breath, my daughter’s last breath to be cherished — just as I cherished their first breaths. On my last night, I want to feel like a child again, safe and beloved.

My friend, B.J. Miller, a palliative care physician, has made it his mission to help people live well in the face of death. He knows life, death and suffering. He says, “At the end of our lives, what do we most wish for? Comfort, respect, and love.”

I have no desire to give a “last lecture” when my time comes. I’ve had many opportunities to say what I need to say. I want the last word to go to the elders; I want there to be more elders. I want the last word to go to the young Black man in middle school and the young Black woman in high school now, those who will become elders.

I want to hear the cries and laughter of the baby newly born in the neighborhood that has the most cracks in the sidewalks and a few broken windows — a community that is truly colorful and vibrant, a community that cherishes that baby. I want that child to live to be elderly. I want my current and former students to have their say.

I want us all to rest in peace. I want it never to be said that our birthright pre-determines the length and quality of our lives. The lives of Black folks should end with dignity, their final breath sacred and childlike.

If there is such a thing as a good death, and let us imagine that there is, we take our last breaths, not have them taken.

Complete Article ↪HERE↩!

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Medieval pandemics spawned fears of the undead, burials reveal

A 16th-century drawing by Hand Baldung Grien depicts a German mercenary speaking with Death. As pandemics swept Europe, stories of hungry and vengeful undead grew in German-speaking lands and may be reflected in burial practices.

By Andrew Curry

In 2014, Swiss anthropologist Amelie Alterauge was just a few days into her new job at Bern University’s Institute of Forensic Medicine in Switzerland when she was called to investigate an odd burial in a centuries-old cemetery that was being excavated ahead of a construction project. Of some 340 burials in the cemetery, one stood out: a middle-aged man, interred face-down in a neglected corner of the churchyard. “I had never seen such a burial in real life before,” says Alterauge.

Excavators found an iron knife and purse full of coins in the crook of his arm, positioned as though they had once been concealed under his clothes. The coins helped archaeologists date the body to between 1630 and 1650, around the time a series of plagues swept through that region of Switzerland. “It was like the family or the undertaker didn’t want to search the body,” Alterauge says. “Maybe he was already badly decomposed when he was buried—or maybe he had an infectious disease and nobody wanted to get too close.”

The discovery set Alterauge off on a search for more examples of face-down, or prone, burials in Switzerland, Germany, and Austria. Though extremely rare, such burials have been documented elsewhere—particularly in Slavic areas of Eastern Europe. They are often compared to other practices, such as mutilation or weighing bodies down with stones, that were believed to thwart vampires and the undead by preventing them from escaping their graves. But Alterauge says no one had looked systematically at the phenomenon of prone burials in medieval German-speaking areas that now constitute modern Switzerland, Germany, and Austria.

Now, in a new study published in the journal PLOS One, Alterauge’s research team reveals their analysis of nearly 100 prone burials over the course of 900 years that have been documented by archaeologists in German-speaking Europe. The data suggest a major shift in burial practices that the researchers link to deaths from plagues and a belief among survivors that victims might come back to haunt the living.

A medieval burial in a Berlin churchyard reveals a man buried face down. Prone burials increased in the later Middle Ages and may be a reaction to deaths resulting from the plague.

During the early and high Middle Ages in Europe (ca 950 to 1300), the few bodies that were buried face-down in regional graveyards were often placed at the center of church cemeteries, or even inside the holy structures. Some of them were buried with jewelry, fine clothes and writing implements, suggesting that high-ranking nobles and priests may have chosen to be buried that way as a display of humility before God. One historical example is Pepin the Short, Charlemagne’s father, who reportedly asked to be buried face-down in front of a cathedral in 768 as penance for his father’s sins.

Archaeologists begin to see an increase in face-down burials in Europe by the early 1300s, however, including some on the outskirts of consecrated Christian burial grounds. This shift coincided with devastating plagues that swept across Europe beginning in 1347, killing millions across the continent.

“Something changes,” says Alterauge, who is also a doctoral student at the University of Heidelberg.

As diseases killed people faster than communities could cope, the sight and sound of decomposing bodies became a familiar, unsettling presence. Corpses would bloat and shift, and gas-filled intestines of the dead made disturbing, unexpected noises. Flesh decayed and desiccated in inexplicable ways, making hair and nails seem to grow as the flesh around them shriveled.

Decaying “bodies move, they make smacking sounds. It might seem as if they’re eating themselves and their burial shrouds,” Alterauge says.

A 14th-century drawing depicts the burial of plague victims. German tales tell of nachzehrer (loosely translated as corpse devourers), and wiedergänger (“those who walk again”), which may have been inspired by mass deaths resulting from the plague.

As medieval Europeans tried to explain what they were seeing and hearing, they might have seized on ideas about the undead already circulating in Slavic communities of Eastern Europe: “We don’t have [the concept of] vampires in Germany,” Alterauge says, “but there’s this idea of corpses which move around” that is imported into western Europe from Slavic areas to the east not long after the first plague outbreaks take place in the mid-1300s.

A logic behind the undead

Before the 1300s, medieval stories in German-speaking Europe described helpful ghosts returning to warn or help their loved ones. But in an age of epidemics they took on a different shape: revenants, or the walking dead.

“This shift to evil spirits takes place around 1300 or 1400,” says Matthias Toplak, an archaeologist at the University of Tübingen in Germany who was not involved with the study.

Turning to medieval folklore for clues, Alterauge and her co-authors found tales of nachzehrer, loosely translated as corpse devourers: restless, hungry corpses that consumed themselves and their burial shrouds, and drained the life force from their surviving relatives in the process.

“Historical sources say nachzehrer resulted from unusual or unexpected death,” Alterauge says. “There was a theory someone became a nachzehrer if he was the first of the community to die during an epidemic.”

In pandemic-era Europe, the legend had a compelling logic: As the victim’s close relatives began developing symptoms and collapsing within days of the funeral, it must have seemed as if they were being cursed from the grave.

“The background of all these supernatural beliefs must be the sudden deaths of several individuals from one society,” says Toplak. “It makes sense that people blamed supernatural spirits and took measures to prevent the dead from returning.”

Equally feared at the time were wiedergänger, or “those who walk again”—corpses capable of emerging from the grave to stalk their communities. “When you did something wrong, couldn’t finish your business in life because of an unexpected death, or have to atone or avenge something you might become a wiedergänger,” Alterauge explains.

The new study reveals an increase in the number of bodies placed face-down on the edges of Christian cemeteries between the 14th and 17th centuries. The researchers argue that, in this part of Europe at least, burying people face-down was the preferred way to prevent malevolent corpses from returning to do harm.

Other archaeologists say there could be other explanations. In a world ravaged by deadly pandemics, burying the community’s first victim face-down might have been symbolic, a desperate attempt to ward off further calamity.

“If someone got really sick, it must have seemed like a punishment from God,” says Petar Parvanov, an archaeologist at Central European University in Budapest who was not involved in the study. “Prone burials were a way to point out something to the people at the funeral—somehow the society allowed too much sin, so they want to show penance.”

The next step, says archaeologist Sandra Lösch, co-author of the paper and head of the department of physical anthropology at the Institute of Forensic Medicine at Bern University, would be to look at the face-down burials to find if there are clearer links with disease outbreaks. By analyzing the ancient DNA of individuals in prone burials, for example, it might be possible to sequence specific plague microbes, while isotopic analysis of victims’ bones and teeth “might show traces of a diet or geographic origin different from the rest of the population,” offering another explanation for their out-of-the-ordinary burials.

Because local excavation records are often unpublished, Alterauge hopes more evidence will emerge in the years to come as archaeologists re-examine old evidence or look at unusual medieval burials with a fresh perspective. “I definitely think there are more examples out there,” she says.

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Unpredictability of advanced heart failure complicates end-of-life care, doctors say

Some people with advanced heart failure live for a long time, while others don’t. That uncertain timeline poses challenges for doctors, their patients and families dealing with end-of-life care.

“We’ve had for cancer for many years, which have been used to make sure that end-of-life patients get high-quality care,” said Dr. Rebecca Hutchinson, a hospice and palliative medicine specialist at Maine Medical Center in Portland. “With , we don’t have those indicators.”

That discrepancy motivated Hutchinson and five colleagues to conduct in-depth interviews with 23 cardiologists and across Maine about treating people with advanced failure.

The study, published Monday in the Journal of the American Heart Association, found “prognostic uncertainty” of advanced heart failure complicates how doctors care for patients for several reasons.

“Heart failure is marked by frequent exacerbations where patients can get pretty sick and then recover back to baseline or pretty close back to baseline,” said Hutchinson, who led the study. “At some point, one of those exacerbations usually marks the beginning of end of life, but it’s not always easy to tell. Are you in one that’s close to end of life or are you in one where there’s going to be a recovery?”

That, she said, forces doctors to balance the desire to prolong life against the possibility that more treatment will do no good and cause unnecessary suffering. The uncertainty often makes it harder for patients to recognize the reality of their disease, and harder for doctors to discuss the situation with them, the study found.

“Doctors told us that patients with heart failure frequently don’t realize that this is a terminal disease,” she said. “That makes it harder to have the end-of-life conversations early to make sure we’re giving them care that’s consistent with their values.”

According to American Heart Association statistics, an estimated 6.2 million U.S. adults have heart failure, where the heart cannot pump enough blood to meet the body’s needs. About one-tenth of those are classified as advanced heart failure, where usual treatment is not effective but the remaining life span is hard to predict.

The study also examined differences in urban and rural areas, where patients may have less access to medical specialists and quality in-.

“That’s good and bad,” Hutchinson said. “Patients in tend to have less aggressive (unnecessary) interventions at the end of life, but it’s bad in that they may not have access to life-prolonging therapies.”

Hutchinson said the findings emphasize the need for better methods to calculate a patient’s prognosis and determine a patient’s values so that end-of-life care matches what the patient wants. Regardless, she said, —medical help to relieve the symptoms and stress of a serious illness—should be part of the plan.

“Palliative care really shouldn’t be tied to a prognosis,” Hutchinson said. “A lot of people associate palliative care with end-of-life care and hospice, but it’s really not.”

That point alone makes the study worthwhile, said Dr. Diane Meier, director of the Center to Advance Palliative Care and a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City.

While people choosing hospice must agree to relinquish insurance coverage for life-prolonging treatment, she said, “palliative care has no such restrictions. You can get it whether or not your disease can be cured, whether you’re going to live with it for 20 years or whether it’s progressive. Eligibility for palliative care is based on need—symptom distress, family exhaustion, uncertainty about what to expect—and not on prognosis.”

Meier, who was not involved with the new study, said changing the mindset is particularly important for heart patients, who may have years to live but face issues such as depression, anxiety and social withdrawal. She said all of that can be helped by palliative care, which research shows can improve quality of life and symptom control in people with heart failure.

“The important take-home message is we offer both life-prolonging treatment and palliative treatments meant to improve quality of life and day-to-day functioning—at the same time,” she said. “We need to replace our either/or mindset with a both/and model.”

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