Category: Death Education

Posted on

Washington State Weighs New Option After Death: Human Composting

A green burial plot at the Woodlawn Cemetery in Snohomish, WA

By Kirk Johnson

Leslie Christian recently added unusual language to her living will: After death, she hoped her remains would be reduced to soil and spread around to help out some flowers, or a tree. In essence, compost.

“It seems really gentle,” said Ms. Christian, 71, a financial adviser. “Comforting and natural.”

A bill before the Washington State Legislature would make this state the first in the nation — and probably the world, legal experts said — to explicitly allow human remains to be disposed of and reduced to soil through composting, or what the bill calls recomposition.

The prospect has drawn no public opponents in the state capital as yet, but it is a concept that sometimes raises eyebrows. Funeral directors say a common reaction to the idea, which has been explored and tested in recent scientific studies, is to cringe.

“There’s almost a revulsion at times, when you talk about human composting,” said Brian Flowers, the managing funeral director at Moles Farewell Tributes, a company north of Seattle that supports the bill.

In truth, composting is an ancient and basic method of body disposal. A corpse in the ground without embalming chemicals or a coffin, or in a quickly biodegradable coffin, becomes soil over time.

But death certificates in many states include a box that must be checked for burial or cremation, with no other options. Aboveground composting, through a mortuary process that requires no burial or burning of remains, is a new category without regulation about how it should be done or what can be done with the compost. What that means is that hardly any funeral director — even in states where laws about human remains are loosely worded — would risk offering it without state permission.

Pete Seeger, the folk singer, crooned about the idea: “If I should die before I wake, all my bone and sinew take. Put them in the compost pile to decompose a little while,” goes the song “In Dead Earnest.”

“When radishes and corn you munch you may be having me for lunch.”

In America, there are regional patterns to what comes of bodies after death. In the South and Midwest, where religious or cultural traditions run deep, more families opt for caskets and concretes vaults, and fewer choose cremation, experts say. In the Northeast, where family roots sometimes extend back centuries, people often favor burial in local cemeteries alongside ancestors.

In the Pacific Northwest, by contrast, death is treated somewhat differently, for reasons that sociologists and religious experts have long pondered. It’s a region where transient newcomers have defined the culture since pioneer days. Church attendance is among the lowest in the nation. Preservation of the environment is a central concern.

In Washington State, a larger percentage of residents are cremated than in any other state. Washington has more “green cemeteries,” which encourage a return to nature without manicured lawns and chemicals, than most states; only California and New York have more. And laws allowing physicians to help terminally ill patients hasten their deaths, known as “death with dignity,” were pioneered in the Pacific Northwest.

“It’s this interesting combination of environmental sensibility and individual choice,” David C. Sloane, a professor of public policy at the University of Southern California, said of the Northwest region. Now the prospect of legalized human composting, he said, puts many of those regional impulses in a spotlight. “It’s a test case for seeing how people think,” he said.

A container used in a study of human remains and composting last year at Washington State University.

Jamie Pedersen, a Democratic state senator from Seattle, is leading efforts to pass the legislation to permit a composting process after death.

Democrats control both chambers of the State Legislature, and Mr. Pedersen, the bill’s sponsor, said he had enlisted support from Republicans as well. Gov. Jay Inslee, a Democrat, has taken no position, a spokeswoman said.

At a hearing this month, no one spoke in opposition, though a state association of funeral directors said that it hoped clearer information could be added to the bill about where composted remains could be distributed. It was uncertain, too, whether such a measure would be seen as a priority during a legislative session crowded with issues that may be easier for politicians to talk about and win points on.

The bill would also legalize a separate process sometimes known as water cremation or alkaline hydrolysis. Under that process, already legal in 16 states, bodies are dissolved using a mixture of heated water and lye, leaving behind bone fragments and a sterile liquid.

People are drawn to the idea of aboveground decomposition mainly for environmental reasons, Mr. Pedersen said. There’s no coffin, no chemicals, none of the fossil fuels that would be needed for cremation, and no expensive cemetery plot required. Some religious traditions also favor ideas of simplicity and of earth returning to earth.

Though the process sounds simple, it would not be cheap. Preliminary estimates suggest that it could cost at least $5,000 — less, perhaps, than an elaborate burial service, but more than the most basic cremation.

In a study last year at Washington State University, six bodies donated for the research were placed in a closed container, wrapped in organic materials like alfalfa, then bathed in a stream of air warmed by microbes, and periodically turned. Lynne Carpenter-Boggs, a professor of soil science and sustainable agriculture and the lead researcher in the study, said that after about 30 days, the bodies essentially became soil.

Fears that composted remains might smell bad or contain toxic elements — from dental fillings, for example, or pharmaceutical residues — were allayed, Dr. Carpenter-Boggs said. She said that the heat generated by micro-organisms broke down organic matter and pathogens, and levels of pollutants like cadmium and mercury were within federal limits.

“It certainly is feasible that families would take home a small portion that they could keep for a long time,” Dr. Carpenter-Boggs said. “Or families could bring home a small amount that would be interred into their landscape, placed under a loved one’s favorite tree, similar to what people do with cremains.”

Katrina Spade, the founder and chief executive of Recompose, a Seattle company that hopes to build the first facility to use the new method and conduct funeral services based around it, said the movement toward cremation — now used in more than half of deaths in the nation — has led to an erosion of essential rituals. Remains are often just picked up from a crematory, she said, and that’s that.

“This is not simply a process to convert bodies to soil; it’s also about bringing ritual and some of that ceremony back,” Ms. Spade said.

Ms. Christian, the woman who is hoping recomposition will be an option after she dies, says she has long been uncomfortable with the other choices. She has ruled out burial. And she does not like the idea of cremation because of environmental costs — emissions and climate impacts of fossil fuels used in the burning process. But her friends remain divided on the issue.

“The vast majority are like, ‘That is so cool,’” she said. “And then the other response is, ‘Oh, gross.’”

Complete Article ↪HERE↩!

Posted on

A Difficult Conversation

by Cristian Cano

Where do you see yourself in five years? Ten? Twenty? It’s not an unusual question to hear, though answering it is never easy.

But what if you knew you weren’t going to live that long? What if you knew your death was coming in a matter of months — or even sooner?

End-of-life care is, generally speaking, the care that someone receives after being diagnosed with a terminal illness, such as cancer or Alzheimer’s disease. While some diseases may be treatable and even curable, terminal diseases are typically those for which there are no cures, and decisions regarding end-of-life care prioritize making the most of an individual’s time left.

Max Vergo, a palliative care doctor and assistant professor at the Geisel School of Medicine, explained that end-of-life care is highly individualized, and not all treatments are appropriate for a patient’s wishes. For example, some patients prioritize extending their lifespans as much as possible, perhaps to be able to attend a special event like someone’s graduation. But opting to live longer might come at the cost of a lesser quality of life, such as being bound to a hospital bed.

Other patients, however, would rather prioritize different treatments that would allow them to maintain a certain quality of life — say, being able to walk freely or live at home — even if that means their death may arrive sooner.

“For some people, [prioritizing living longer] feels like the quality would be so poor, it wouldn’t really be valuable time,” Vergo said. “Knowing that their time is limited anyway, they may choose a [different] path. … At least they’ll have some control over what the quality [of life] looks like.”

End-of-life decisions, while incredibly individual, often involve an entire of team of medical professionals. Kathryn Kirkland, the director of palliative care at Dartmouth-Hitchcock Medical Center and a professor at Geisel, spoke about how her patients interact with an interdisciplinary team of doctors and nurses, social workers, chaplains, creative writing specialists, artists and other volunteers, all of whom work to take care of “the whole person.”

Kirkland also explained how her team works with patients’ families and loved ones as well. For example, patients with terminal issues often experience feeling like a burden to their families. In those cases, patients and their families go through counseling to discuss those feelings and identify ways to alleviate them.

“Taking care of somebody who is very sick is a hard thing to do sometimes,” Kirkland said. “Most family members end up reassuring the person with [the] illness that they want to help, that the patient is not being a burden, but unless you have those conversations, it can be hard to influence people’s decision making.”

Among the many options that patients sometimes have, one of the most controversial is physician-assisted dying, also known as physician-assisted suicide. Ann Bumpus, who taught the course Philosophy 5, “Philosophy and Medicine” last fall, explained how physician-assisted suicide is different from euthanasia because patients take a drug that they know will cause their deaths, whereas euthanasia is when a physician administers the drug, usually via an injection.

Euthanasia is illegal in all 50 states, but physician-assisted suicide is legal in a handful of states. It became legal for Vermont residents in 2013 with Act 39, the Vermont Patient Choice and Control at the End of Life Act; physician-assisted suicide is still illegal in New Hampshire.

Cristine Maloney is the hospice medical director for Visiting Nurse and Hospice for Vermont and New Hampshire, meaning that she sees patients in both states. She noted that, given the difference between the law between Vermont and New Hampshire, she’s always cognizant of which side of the border she’s on when working with patients.

Maloney noted that when discussing the option with patients in Vermont, she tried to understand why they are considering it in the first place. Many patients are unfamiliar with the process, which requires two different physicians — one consulting and one prescribing — and a waiting period of at least two and a half weeks. Another misconception is that patients receive a shot or intravenons treatment to end their life, when in reality, it’s a powder that dissolves in water that patients must be able to take by themselves.

When asked about the emotional aspect of physician-assisted dying, Maloney said that many of her discussions with patients revolve around their desire to have control over this aspect of their life, as well as the expected nervousness about what dying is like. She noted that family members, and even the doctors who prescribe the medicine, often feel intense emotions too.

“After a patient takes medication like this, they die, but their caregivers or family members live with that experience, and so they often have also had some strong opinions … or feel nervous or concerned about it as a family member,” Maloney said. “I think the same is true for the [physicians]. Most of them are doing this for the first time, and it’s very different than anything a physician usually does. We’re usually doing the opposite, giving folks medications to not end their lives.”

How does physician-assisted dying enter into the broader topic of suicide as a whole? The name of the process itself is controversial. While the terms “physician-assisted dying” and “physician-assisted suicide” seem interchangeable in everyday discourse, Vergo expressed a strong preference toward the former.

“In our profession, [we don’t use] ‘suicide’ because these are rational decisions that people make,” Vergo said.

Bumpus spoke about how some of the arguments against physician-assisted dying include the possibility that it leads to a rise in suicide rates in young people and terminally ill people, acknowledging that there is not yet good evidence to prove or disprove the concern. She also touched upon the use of the word “suicide” instead of “dying.”

“Calling it suicide emphasizes the similarity, and the similarity is just that, technically, the person takes their own life,” Bumpus said. “I think using the word suicide for both overstates the similarities. I’m not saying that suicide is always irrational or always wrong, but I think these cases are really special end-of-life cases and ought to be looked at separately.”

Another compelling concern with physician-assisted suicide that Bumpus brought up was that vulnerable populations, including individuals without good health insurance or a strong understanding of the medical system, may be pressured — however subtly — to choose physician-assisted dying without exploring other options as much as they would have otherwise. While we, as a society, often believe that more options leads to more freedom, that’s not always the case, and offering physician-assisted suicide could end with patients feeling obligated to take it.

So, what can students do? For students who are interested in the medical field and may one day have end-of-life care conversations with patients and families, Vergo spoke about how much of his teaching work involves perspective training. It’s essential for physicians to understand how, given the same information, different people can have different perspectives, and none of them are wrong. He also acknowledged that having these conversations can be emotionally taxing for health care professionals as well, and a tried-and-true “scaffold” to fall back on during these conversations can help.

Vergo emphasized that no one is born having mastered these skills, but instead they are gained gradually with practice and training.

“It’s just like in sports,” Vergo said. “You don’t just become an awesome soccer player on your own. You usually have a team and then a coach that helps you figure out how you can take the next step in your skills. We do a lot of coaching.”

For students who aren’t necessarily interested in the medical field, these topics can still be important to think about, especially since many patients in end-of-life care couldn’t have anticipated their current situations. Kirkland, who has taken care of students who have gotten into car crashes or skiing accidents, has even seen friends enter positions where they had to make important decisions. While these topics aren’t always easy to talk about, having conversations early about what you value most in life is a valuable investment.

“Even though students don’t really want to think about how they’re mortal like everyone else, it is probably worthwhile to think about who you would want making decisions for you if you couldn’t make them for yourself,” Kirkland said. “Having conversations with families is important to do.”

Complete Article ↪HERE↩!

Posted on

The Doctors Who Invented a New Way to Help People Die

The two lethal medications used by terminal patients who wish to end their own life recently became unavailable or prohibitively expensive.

Youssef Cohen, a right-to-die advocate with an incurable cancer, rides to a doctor’s appointment in New York with his wife in 2016.

By Jennie Dear

In 2016, a small group of doctors gathered in a Seattle conference room to find a better way to help people die. They included physicians at the forefront of medical aid in dying—the practice of providing terminal patients with a way to end their own life. And they were there because the aid-in-dying movement had recently run into a problem. The two lethal medications used by most patients for decades had suddenly become either unavailable or prohibitively expensive. When doctors briefly tried a substitute, some patients had rare but troubling experiences.

The Seattle group hoped to discover a different drug. But the practicalities of aid in dying, a controversial policy still illegal in most of the United States, are not like those in other medical fields. “There’s lots of data on stuff that helps people live longer, but there’s very little data on how to kill people,” says Terry Law, a participant at the meeting and one of the most frequently used aid-in-dying doctors in the U.S.

Seven states—including Hawaii, where a law took effect on January 1—and the District of Columbia now allow doctors to write lethal prescriptions for qualifying, mentally capable adults who have a terminal illness. And support for the practice has gained new national momentum after the widely publicized death of Brittany Maynard, a young cancer patient who moved to Oregon in 2014 to take advantage of that state’s aid-in-dying law.

But the public remains deeply conflicted about the laws—as does the medical community itself. No medical association oversees aid in dying, and no government committee helps fund the research. In states where the practice is legal, state governments provide guidance about which patients qualify, but say nothing about which drugs to prescribe. “Nowhere in the laws is there any sort of guidance for how to do it. There is no oversight to make sure that it’s happening in a safe way, apart from annual reports and kind of a face-value annual hearing,” says Laura Petrillo, a palliative-care physician who opposes legalized aid in dying.

The meeting of the 2016 group set in motion research that would lead the recipe for one of the most widely used aid-in-dying drugs in the United States. But the doctors’ work has taken place on the margins of traditional science. Despite their principled intentions, it’s a part of medicine that’s still practiced in the shadows.

On the surface, figuring out protocols for hastening death doesn’t seem complicated. Lonny Shavelson, a California physician who specializes in aid in dying, says that when he explains to patients it might take an hour or more for them to die, they’re often shocked. They tell him, “When I put down my dog, it took 10 minutes,” he says.

But veterinarians can use lethal injections on pets. In the U.S., aid-in-dying drugs must be ingested by the patient. The first proposed aid-in-dying law in Washington State would have allowed physicians to inject medications, but that legislation failed to pass. In 2008, a modified law was voted in, with an added requirement that patients self-ingest to help protect them from the possibility of family coercion.

For years, the two barbiturates widely considered the best drugs for hastening death in terminally ill patients were secobarbital and pentobarbital. These medications were painless, fast-acting, and relatively affordable. But since 2015, they’ve been largely unavailable. U.S. pharmacies stopped carrying pentobarbital approved for human use, and the price of secobarbital doubled from an already historic high after Valeant Pharmaceuticals (today known as Bausch Health) bought the manufacturing rights. A few years ago, a lethal dose cost about $200 or $300; now it can cost $3,500 or more.

To help patients who could no longer afford the drug, aid-in-dying groups sought a fix. In Washington, an advocacy organization called End of Life Washington briefly advised prescribing a drug mixture with the sedative chloral hydrate to about 70 patients. “We know this is going to put you to sleep, and we’re pretty sure it’s going to kill you,” Robert Wood, a medical director at the organization, says they told the patients. It worked, but with a tragic catch: In a few cases, the chloral hydrate burned people’s throats, causing severe pain just at the time they expected relief.

The End of Life gathering was born out of the need for a better solution. Wood enlisted three others affiliated with End of Life Washington: Law, its president; Tom Preston, a former medical director; and Carol Parrot, a retired anesthesiologist who, like Law, is one of the most experienced aid-in-dying doctors in the U.S. Others joined that meeting or later ones by telephone: a toxicologist in Iowa, a veterinarian, a pharmacologist, another anesthesiologist. The group had three main criteria, Parrot says: They wanted “a drug that would: number one, put a patient to sleep and keep them asleep; and, number two, make sure there was no pain involved; and number three, ensure that they would die, and, hopefully, die relatively quickly.” Plus, it had to be cheap. They aimed for $500 a dose.

The doctors considered a malaria medicine known to be lethal in large doses, but read that it caused severe muscle spasms in some patients. They discussed the synthetic opioid fentanyl, but were deterred by the drug’s newness and dangerous reputation. So the group decided to use a combination of medications, and eventually settled on high doses of three: morphine, diazepam—also known by its early brand name, Valium—and propranolol, a beta-blocker that slows the heart. They called the mixture DMP.

Next, the group had to test the drug. But they still didn’t have a way to follow standard procedure: There would be no government-approved clinical drug trial, and no Institutional Review Board oversight when they prescribed the concoction to patients. The doctors took what precautions they could. Patients could opt in or out, and for the first 10 deaths, either Parrot or Law would stay by the bedside and record patients’ and families’ responses.

The first two deaths went smoothly. But the third patient, an 81-year-old with prostate cancer, took 18 hours to die, Parrot says. In Oregon, where aid in dying has been legal for 20 years, the median time from taking the medication until death is 25 minutes. Patients themselves typically become unconscious in five or 10 minutes, so they are not affected by protracted times, Parrot, Wood, and Law all emphasize. But longer waiting periods can be nerve-racking for families and other caregivers, especially in the exceptional cases where these have persisted for a day or more.

Parrot and Law halted the DMP trial. The informal research group met again, this time by teleconference, and Law dug through the literature and found an article about people who purposely overdosed on digoxin, a cardiac drug. The group added it to the prescription, and the drug became DDMP.

At first, Parrot gave patients latitude in how they took this new drug combination. “One guy chugged a half a cup of Bailey’s Irish Cream, his favorite thing, after he had his medicine,” she says. “He probably took five or six hours to die.” She suspects that the fat particles in the Bailey’s slowed his gastric emptying. So the researchers checked in with each other again, and decided to increase the doses to what Parrot calls “blue-whale-sized doses.” They dubbed the modified formula DDMP2.

The drug is not a perfect aid-in-dying solution. Secobarbital is faster-acting and remains the drug of choice when patients can afford it, Wood says. Just as in the case of the barbiturates, a few outlier patients on DDMP2 take hours longer to die. And the mixture tastes extremely bitter. “Imagine taking two bottles of aspirin, crushing it up, and mixing it in less than half a cup of water or juice,” Parrot says.

Still, DDMP2 has become the low-cost solution the Seattle group set out to discover. In 2017, secobarbital was still the most commonly prescribed drug in Washington and Oregon, but in Colorado, DDMP2 was more commonly prescribed. The drug consistently accomplishes its purpose in hastening death, Parrot says: “It always works. It always, always works.”

Parrot and Wood keep track of patient data, and they continue to make discoveries. By examining medical histories of the patients who took longer to die, they’ve learned about certain risk factors for longer deaths: being on extremely high doses of painkillers such as fentanyl or morphine; being very athletic; having a compromised digestive tract. For patients who are especially risky, Parrot or Wood will sometimes offer the choice of chloral hydrate, the drug that burned some patients’ throats, although they say they carefully discuss potential problems with patients and families.

Together, Parrot and Law have written perhaps 300 lethal prescriptions over the years and observed the effects of medications on numerous patients. Neither set out to be an aid-in-dying advocate; they turned to End of Life Washington after witnessing the suffering of some dying patients. About eight years ago, Law says she was asked to prescribe lethal medications for a dying woman whose regular doctors had refused. She agreed to see the woman, and realized how difficult it was for some aid-in-dying patients to find doctors. Parrot says she was profoundly affected by the deaths of two close friends who asked her to help hasten their dying, but who lived in states where the practice was illegal. She was unable to help them, and began volunteering as an aid-in-dying doctor soon after she retired.

Most medical professionals don’t participate in aid in dying. Some physicians are concerned that their Hippocratic oath prohibits intentionally helping someone die, or that aid-in-dying requests originate from treatable pain or depression. Some worry about the broader repercussions for a society that accepts medically aiding the deaths of the terminally ill. The American Medical Association remains officially opposed.

Without the support of the rest of the profession and much of society, aid-in-dying research methods don’t fit the model of good medical research, says Matthew Wynia, the director of the Center for Bioethics and Humanities at the University of Colorado. There’s no standard protocol, no standardized data collection or independent group that monitors data and safety—all of which are intended to protect patients and help ensure the quality of the research.

The Belmont Report, which guides federal recommendations for research on human subjects, recognizes that sometimes, no satisfactory options exist for some patients, Wynia points out. In those rare cases, a doctor may want to try an innovative treatment, something for which there’s no approved research protocol. While that’s legal, clinicians are supposed to avoid turning that innovation into established practice, or doing unapproved research on numerous patients, according to Wynia. Some of the same issues exist with medical marijuana, which is legal in several states but still illegal federally. “There’s no way to fix this at the individual level,” Wynia says. “There’s no immediate answer.”

That leaves researchers like Law and Parrot in a bind. They don’t have good ways to do research and communicate what they learn. But they’ve witnessed the suffering some dying people experience, and contrast that with many peaceful deaths of patients who choose aid in dying. “These are not hard deaths,” argues Shavelson, the California physician. “These are lovely deaths.”

Shavelson says he tries to be at the bedside on the day of his aid-in-dying patients’ death. “It’s a lighter atmosphere than you think,” he says. The patient takes the first drug, which Shavelson separates out from the rest of the mixture, and then Shavelson sits down at the bedside and reads aloud questions from the state’s required report. After about 30 minutes, he asks: “Are you ready to take the medications?” He mixes the drug cocktail and the patient drinks it.

“Usually, they go silent after taking the medication,” he says. “They’ve said what they’re going to say by that time.” For a few minutes, patients usually continue to sit silently, their eyes open. “And then, very, very slowly, they’ll close their eyes.”

Shavelson asks intermittently, “Are you still there?” At first, patients usually say yes, or nod. Within five or 10 minutes, they stop responding to the question. Then Shavelson will gently touch their eyelids. “When people aren’t deeply unconscious, they’ll sort of have a twitching response,” he explains. Within 10 or 15 minutes, the twitching response disappears, and patients enter a deep coma.

Using a heart monitor, Shavelson tells caregivers as a patient’s pulse slows and oxygen levels drop. “We wait a little while, and then I say, ‘Ah, the patient’s now dead.’”

This is the first generation of patients who have consciously hastened their death with medications in this way, Shavelson says. He tells them they’re pioneers. “What a different thing, to be able to say, ‘This is the day I die,’” he says.

Complete Article ↪HERE↩!

Posted on

Morphine, And A Side Of Grief Counseling:

Nursing Students Learn How To Handle Death


Belmont University’s nursing program started hiring actors like Vickie James to help with their end-of-life simulations for students.

By

Nursing requires hands-on training. But research has found that university curriculum often goes light on one of life’s universal experiences — dying. So some colleges have gone to new lengths to make the training more meaningful.

There’s a sound near the end — the death rattle. People stop swallowing. The lungs fill up. There can be involuntary moaning.

“So you get all that noise. And that’s really distressing for family members,” Professor Sara Camp of Nashville’s Belmont University says.

Camp and other nursing instructors at Belmont wear headsets and watch video monitors in a dark closet. The sounds they make emerge from realistic robots lying in hospital beds on the other side of the wall. The instructors also control the stats for the robots’ breathing, pulse and blood pressure.

Other than administering morphine, there’s no exact prescription for students to follow. A review of nursing textbooks found many make no mention of this standard part of the job. And studies of professional nurses find that many feel unprepared.

Belmont adjunct nursing instructor Morgan Bryant mimics the “death rattle” in her headset, also controlling the pulse, breathing and blood pressure of the simulated patients in the lab.

“They’re really comfortable in their skills, like putting in IVs and giving medications,” Camps says. “In this one, they have to focus on communication, when there’s not that much to do. It challenges them.”

There are family dynamics to navigate, like explaining to grown children how their mother signed a do-not-resuscitate order. They have to balance caring for the dying patient and attending to the patient’s family.

In response to surveys showing anxiety about death among young nurses, Belmont started hiring actors to make these end-of-life interactions as realistic as possible.

“That old cancer … didn’t want it to come back,” says Vickie Bailey, who has embraced her role as a grieving daughter.

The student, senior Sara Lindsay, sits on the bedside and puts a hand on Bailey, warning that the end is near.

“Now would be a good time if you have prayers or anything you want to say,” she tells Bailey.

“I’ve been praying all morning,” Bailey responds, in character.

The monitors stop beeping. Everyone sits in silence.

Once the simulation ends, Lindsay marvels at how real the moment felt.

Half a dozen beds are going at the same time in this simulation lab. And all the students gather to debrief afterward. Senior Zacnite Vargas volunteers that she second-guessed herself.

“Should I say she’s dying? She’s dead? She’s passed?” she asks. “I don’t know how to be straight-forward with it.”

Camp tells the class to be cautious, especially about predicting when a patient will die, but also show compassion.

“They may not remember what you say, but they’ll remember how they feel when you were there, because you were there.”

It’s such important work, Camp says, that more students should get the chance to rehearse.

Complete Article ↪HERE↩!

Posted on

The Choices We Make for Others at the End of Life

A palliative care nurse explains what to expect in the last days and hours.

A dying person’s attention turns toward a place we do not see and that they cannot explain. They are done with the business of the living, as it were, and more or less finished with us.

Excerpted from Advice for Future Corpses by Sallie Tisdale.

In Advice for Future Corpses, author and palliative care nurse Sallie Tisdale shares insight and contemplation into what constitutes a good death. Managing our own avoidance and fear, she writes, is key to shepherding a peaceful final passage. Here she describes what to expect, and consider, during the last days and hours.

Death takes many forms. One death is anticipated over months. Another death is stunningly abrupt. And now and then death is held back by technology. I have seen how these deaths are different, and they are all the same, in the end: A person breathes and then breathes no more. He enters a stillness like no other. Breath. Another breath, and then no more. But when the breaths are made by a machine or the blood pressure is sustained by powerful drugs, someone has to make an awful decision.

Many aspects of medical and nursing care become unnecessary or intrusive for a dying person. Will the result of a lab test change the plan? If not, then don’t do it. Why take another vitamin? Are you really worried about the cholesterol level at this point? You don’t need to check blood pressure routinely. But sometimes a person is already hooked up—intravenous fluids and drugs to raise blood pressure and support for breathing—and the only way to stop the intrusion is to unhook. The advent of machines like defibrillators and ventilators created a new kind of crisis for the dying. (One report from the time referred to “this era of resuscitatory arrogance.”) A lecture in 1967 about how medicine should define death was called “The Right to Be Let Alone.”

Futility is a legal term in health care. A doctor, a team of people, even a hospital, can invoke futility and refuse to continue treatment that only prolongs suffering. This doesn’t happen immediately; it’s a drawn-out, painful process. The vocabulary makes everything worse. Doctors speak almost glibly about “withdrawing” or “withholding” treatment. The nurse says, “There’s nothing more to be done.” Which is a stupid thing to say, because there are all kinds of things to be done; they just don’t involve trying to keep someone alive. Such comments create a terrible sense of culpability in a heartbroken spouse or child. But what is really being done is good care.

Journalist and author Virginia Morris pleads for a change of terms: “When we take a terminally ill patient off life support, we are not ‘pulling the plug,’ we are ‘freeing’ the patient to die. We are ‘releasing’ her from excessive technology and invasive treatments. When we allow death to happen, we are not killing people, we are caring for them. We are loving them.”

We want to put it off as long as possible. Even if we are sure that Mom or Dad wouldn’t want to be kept alive “on a machine,” in the moment of crisis when everyone is yelling at us to decide, we’re not prepared. We literally have no experience making such a decision; we may do it only once in our lives. 

The hardest part is the loss, but a close second is the need to shove your own fears and desires to the side. Surgeon and bioethicist Sherwin Nuland said that at the time when decisions about life support and life-prolonging treatments are being made, “everybody becomes enormously selfish.” He emphatically includes doctors and nurses in with the family. We may not recognize that selfishness is driving the words we choose or the kind of advice that’s given. Doctors may not have any idea they are doing this. When they offer yet another experimental drug, they may genuinely believe they know what’s best for the patient. But best: Best is subjective. Best is your point of view. Best is what you want.

Being able to make a decision like this for another requires an understanding of each other, and time for self-reflection. You have to consider the painful, scary, and unwanted fact of separation. You are the proxy for the person in the bed. What she wants is all that counts. You want the person to live. Or you want the person to die your version of a “good” death. Or you want him to live another week until the rest of the family arrives. You want the gasping holler of pain in your chest to go away. Can you choose a course of treatment that will allow the person you love most in the world to die? Can you say no on their behalf to something you would choose for yourself? Can you say yes on their behalf to an end you would never want? Can you set your own beliefs to the side? This inevitable conflict of interest—you are dying and I want you to live—is why a spouse or close family member often should not be the one making all the decisions. You have to ignore the begging chorus in your head, because it’s not about what you want.

In an old Japanese tradition, a person writes a poem on New Year’s Eve that will be read at their funeral if they die in the coming year. A modern addition to this practice includes having a professional funeral photograph taken and picking out the clothing you want to wear, in styles specially made for corpses. The Japanese word jōjū means ever-present or unchanging. I like the translation “everlasting.” The image of jōjū is often the moon. How can the moon, which is never the same from night to night, be everlasting? And yet it is always the same moon. Jōjū is that quality of unstoppable change and the eternal at once. Death comes even while we are alive.

In the early 1700s, Mizuta Masahide, an admirer of the great poet Bashō and a doctor by profession, had a fire at his home. It burned down his storehouse, leaving his family impoverished. His poem that year:

My storehouse burned down.

Now nothing stands between me

And the moon above.

Everlasting.

A dying person’s attention turns toward a place we do not see and that they cannot explain. They are done with the business of the living, as it were, and more or less finished with us. Now they are not a mother or a plumber or a friend. Now they are entirely a dying person, and the world begins to shine. In spite of going hours without speaking, in spite of needing help to button a shirt, he is busy. He may not have the energy to talk, because he is waiting for something and that takes everything he has left.

He may be waiting to understand why.

Laugh. Laugh! Sing. The last kiss, the last dream, the last joke to tell. I have been telling you all the many things we might say, and shouldn’t. Things to say as the end is coming: I love you. I hope the best for you. We will be all right. Go with peace.

Then we are listening again. We are returning to stillness, and to hearing what is being said without words. Most of us are not used to silence. It takes getting used to. The background noise of our lives is near-constant: endless voices, television, music, traffic, the ping from incoming texts, the demanding requests of daily life. Because we aren’t used to silence, we don’t understand how to be in it, how full it is. We may struggle against it, but silence is part of this world now. Silence is attention. Attention on this, right here, right now. Attention on the hand against the sheet, the texture of the cotton, the cool cotton. The hand rising to take a cup; the hard, warm curve of the cup. The steam. The heat. The sensation of the bending tendon in the hand, the scratch of a nail along the bedcover. Inhalation. Exhalation. All this in silence, filled with the music between words, what you might call the music of the spheres—the world’s hum. The faint vibration of breath and muscle and time.

The writer Dennis Potter died of pancreatic cancer. A few months before his death, he gave a remarkable interview on the BBC. His wife was also dying, of breast cancer, and he was her main caregiver. He was relaxed and smiling—his pain cocktail was a combination of morphine, champagne, and cigarettes—and full of his signature dark humor. Dying, he said, gave him a new perspective on life; it gave him a way to celebrate.

“The blossom is out in full now,” he said, describing what he saw from his office window. “It’s a plum tree, it looks like apple blossom but it’s white, and looking at it, instead of saying, ‘Oh, that’s a nice blossom’… last week looking at it through the window when I’m writing, I see it is the whitest, frothiest, blossomiest blossom that there ever could be, and I can see it. Things are both more trivial than they ever were, and more important than they ever were, and the difference between the trivial and the important doesn’t seem to matter. But the nowness of everything is absolutely wondrous.” He couldn’t really explain, he added; you have to experience it. “The glory of it, if you like, the comfort of it, the reassurance … not that I’m interested in reassuring people, bugger that. The fact is, if you see the present tense, boy do you see it! And boy can you celebrate it.”

He died nine days after his wife.

Posted on

Let’s talk about death

A growing number of medical schools are incorporating palliative care and end-of-life discussions into the curriculum. The result? Less suffering for patients and physicians.

by Amy Paturel, MPH

During her first rotation in internal medicine, Dawn Gross, MD, PhD, assessed a bone marrow transplant patient along with a group of fellow residents and her attending physician. When they left the young patient’s room, the attending said, “He’s going to die.” Two days later the patient was dead. 

“I remember thinking, ‘What did he see that I didn’t see?’” says Gross, who is now an associate professor in the department of palliative medicine at the University of California, San Francisco. Over time, she learned the science of illness and death and how to tell when a patient is dying. But what stuck with her was the fact that the patient had no idea he was going to die. 

Traditionally, a doctor’s primary job was to keep you alive, not discuss how you want to die — or even if you are going to. Now, the paradigm is shifting. Instead of employing extreme measures, doctors are increasingly learning how to stop interrupting death — and to talk about what that looks like. 

“Patients need to know what is happening to them, so they can plan,” says Tamara Vesel, MD, chief of palliative care and professor at Tufts University School of Medicine. “And doctors need to see illness and death as an opportunity for societal and personal growth instead of a societal and personal failure.” 

Unfortunately, data suggest most doctors feel ill-equipped to tackle end-of-life conversations. A 2014 study published in Palliative Supportive Care reported that more than half of respondents deferred conversations about advance directives to emergency room physicians. And in 2016, 88% of residents reported little to no training on end-of-life care during residency. But that is starting to change. 

“Doctors need to see illness and death as an opportunity for societal and personal growth instead of a societal and personal failure.”
Tamara Vesel, MD
Tufts University School of Medicine

Increasingly, medical school leaders are implementing end-of-life training that includes real-life practical skills. At the same time, more physicians are beginning to view end-of-life conversations as a medical tool that’s as important as any drug or device. The result: “Don’t die on my watch” is being turned upside down. 

A paradigm shift 

With advances in medicine and technology, Americans are living longer, often with ongoing or repeated hospitalizations. More than one quarter of all Medicare expenditures occur during a patient’s last year of life. But life-extending treatments have trade-offs. 

If faced with a serious illness, most people say they would prefer a natural death rather than exhausting all medical options, according to survey data. And more than two-thirds of people say they want to die at home, while less than a third actually do. Medical schools are uniquely positioned to help bridge the gap between what patients want at the end of life and what they’re actually getting.

“Just because we have the technology to prolong life doesn’t mean it’s appropriate to use it,” says Vesel. “The problem is, we’re so afraid of paternalism in medicine that we don’t use our medical knowledge and experience to sufficiently guide patients.” 

Instead, many doctors focus on presenting a smorgasbord of medical choices — “then we let the patient choose so we feel like we’re off the hook,” says Daniela Lamas, MD, a critical care doctor at Brigham and Women’s Hospital, Harvard faculty member, and author of You Can Stop Humming Now.

Yet, according to Scott Halpern, MD, PhD, MBE, professor of medicine at the Perelman School of Medicine at the University of Pennsylvania, the single most important determinant of the choices patients make is how doctors communicate. In a series of studies, Halpern and his colleagues discovered that seriously ill patients are more likely to select comfort-oriented care at the end of their lives if that was the default option they were randomly assigned. Similarly, when chest compressions, breathing machines, and feeding tubes were the default choices, they were more likely to select those invasive measures, too.

The goal for physicians then is to know their patients well enough to shepherd them toward the treatment path that best matches their values. “It is scary to ‘nudge’ a patient toward an end-of-life decision, but maybe that’s what it means to be a doctor — leading patients toward the decisions that are most consistent with their wishes,” says Lamas. 

That’s one reason insurers are paying doctors to have real conversations around end-of-life planning. The goal: to limit suffering for the patient and his or her loved ones — but also to provide a meaningful way for physicians to help guide patients through the natural process of dying.

A new wave of training

Currently, the Liaison Committee on Medical Education, the organization that accredits medical schools, does not require clinical rotations or courses on palliative medicine or end-of-life care. Part of the issue is that these skills “can’t be taught through lectures and demonstrations,” says Susan Block, MD, a professor of psychiatry and medicine at Harvard Medical School. “The only way to improve competencies is through field practice and feedback.” 

To that end, a growing number of medical educators are creating rotations within hospices, nursing homes, and assisted living facilities to give students and residents an opportunity to practice these skills. Institutions, including Tufts University School of Medicine, the Robert Larner, M.D., College of Medicine at The University of Vermont, University of California, San Francisco, School of Medicine, and others are weaving palliative care training into everything students do. “That’s a huge culture shift,” says Gross. 

To determine how best to train students to do this important work, Tufts University School of Medicine Dean Harris Berman has been meeting with the academic deans of four Massachusetts medical schools every six months since early 2017. The deans agreed upon a set of minimal competencies every medical student should have prior to graduation, and continue to work on next steps to meet and test these competencies.

As part of this effort, Tufts University School of Medicine plans to introduce a new curriculum in the fall of 2019. “Rather than a single class, a ‘Patient Experience’ thread — encompassing end-of-life and palliative care, advanced communication, and impact of health on patients and their families — will follow students through all four years of medical school,” says Vesel. 

The Larner College of Medicine, too, is equipping physicians-in-training to have these conversations. In addition to integrating palliative care and end-of-life training into all four years of medical school, third year students participate in a “bridge week” focused solely on hospice and palliative medicine. The 35-hour curriculum covers practical skills, symptom management, communication tools (with hands-on simulated training), and resilience, explains Stephen Berns, MD, director of education for palliative medicine and assistant professor of family.

Using tools developed by a nonprofit training organization called VitalTalk and Atul Gawande’s Ariadne Labs’ Serious Illness Care Program, Larner COM students learn how to share information, respond empathically, and drill down patients’ values. “It’s really about helping medical students and residents use their medical expertise to identify a treatment plan that matches patients’ goals,” says Berns. 

At the Perelman School of Medicine, Halpern lectures fourth year medical students about how patients, caregivers, and clinicians make end-of-life decisions. Their program also requires pulmonary and critical care fellows to participate in end-of-life communication training before beginning their fellowship. “Each fellow has to have a number of supervised conversations with real patients and family members,” says Halpern. “They’re also required to watch and listen to attendings engage in similar conversations.” 

Surveys consistently show that care providers who do this well can make a significant difference for patients. Research indicates that palliative medicine can reduce anxiety and pain, relieve symptoms, and improve quality of life and mood. It can also reduce spending, according to a recent meta-analysis of inpatient specialty palliative care.

Coming full circle

At the dawn of medicine, physicians were with their patients throughout the life cycle — and certainly at their death. Doctors viewed being at the patient’s deathbed as an honor, a privilege. Medicine is slowly returning to those values.

“We’re all taught a structure for taking medical notes. The first stop: chief complaint, abbreviated as ‘CC.’ My dream is that instead of the chief complaint, it’s ‘CW,’ or chief wish. What does the patient wish for? When we start to ask what’s getting in the way of doing that, it changes how we care for people.”
Dawn Gross, MD, PhD
University of California, San Francisco

Research consistently shows that doctors who are comfortable with end-of-life issues provide better care to dying patients than those who aren’t. “More and more clinicians are recognizing their professional and moral responsibilities extend beyond preserving life and include helping people whose life is coming to an end have their last days weeks and months be as comfortable and fulfilling and meaningful as possible,” says Halpern. 

Adds Gross, “We’re all taught a structure for taking medical notes. The first stop: chief complaint, abbreviated as ‘CC.’ My dream is that instead of the chief complaint, it’s ‘CW,’ or chief wish. What does the patient wish for? When we start to ask what’s getting in the way of doing that, it changes how we care for people.”

Complete Article ↪HERE↩!

Posted on

I trekked to a graveyard to learn how my ancestors died.

But can genealogy help predict how long I will live?

By Debra Bruno

Fascinated with genealogy, I’ve started spending too many hours chasing snippets of family stories. I figure if I can learn something about my family tree, it might shed light on my health and how long I will live.

I’ve become obsessed with two ancestors in particular: Permelia Van Valkenburgh and her son Amasa Matoon Van Valkenburgh.

Permelia was my great-great-great grandmother. Married at 17 to a distant cousin who shared her last name, she gave birth to 10 children over 18 years and died in 1855 at age 42.

Permelia was a 19th-century farm wife in the Catskill Mountains, a place where people didn’t roam alone at night for fear of panther attacks. Two of her 10 children died in infancy and one at 20. Her next-to-last child, Amasa, was my great-great grandfather. He was 9 years old when his mother died.

What killed her? If it was childbirth, there is no record of a child born or buried the year she died. If it was flu or tuberculosis or another contagious disease, there is no evidence of anyone else in her family dying in May 1855, although both were common causes of death in 19th-century communities. Maybe it was a laceration that became infected, picked up in unrelenting farm and housework. The month of May in the high Catskills could be chilly, and the winter stores of food would have been nearly depleted. Crops would not yet have produced anything. There was the occasional flash flood in the nearby creeks, so maybe she drowned.

Curious about what killed people in rural New York in the mid-19th century, I found the U.S. Census Mortality Schedules for the state from 1850 to 1880. The United States recorded this information once every 10 years and listed only those who died the year of the survey. Even so, I found some interesting details for Greene County, where she lived, in 1850: consumption (tuberculosis), cholera, dysentery, whooping cough, infection of lungs, infection of hand, infection of brain, asthma, childbirth, drowning and cancer were listed as causes of death. The most frequent cause was cholera. Many times, the named cause of death for people in their 80s and 90s was “old age.”

Did any of this have any meaning for me? Probably not. “The big picture is the shift from infectious disease as a major cause of death to chronic diseases,” said Charles Rosenberg, professor of history of science at Harvard. Causes of death such as tuberculosis were “background noise,” he said, so common that they were unremarkable. What drew more attention were cholera epidemics or influenza sweeping through communities.

Susan Speaker, a historian with the National Library of Medicine at the National Institutes of Health, said that before the 1920s, more Americans died of “microbe-caused diseases” than anything else. The balance started to shift by the 1930s and ’40s, she said.

In other words, a farm wife living in the country — while not exposed to the overcrowding and bad water of cities — would have had a number of other health challenges.

For instance, “if you came down with appendicitis in the 1900s in the country, you might be out of luck,” said Speaker, “unless you had a local practitioner who was a decent surgeon.”

While I was getting closer at making an educated guess at the cause of death, my mother and I ventured into the Catskill Mountains one Sunday morning in August after services at the First Reformed Church in Athens, N.Y., the village on the Hudson River where we both grew up and where many of our ancestors now rest.

We drove high into the mountains until the ski resorts and gift shops dropped away, the houses became more spread out, and the forests got thicker in the Catskill State Park, land first preserved by the state in 1885. Finally we reached the turnoff to Westkill, the hamlet of a hamlet, tucked between hills in a valley.

The cemetery was small, with maybe 40 stones. The grass had been newly mowed, and damp cuttings thrown by a power mower still plastered the white sides of the Westkill United Methodist Church (built in 1848) and, next to it, the Westkill Baptist Church (built in 1830). One or two graves had collapsed, leaving a deep, grass-lined trench in the earth. We peered inside the churches, but both had been long abandoned. Even the pews were gone.

Back at the far edge of the cemetery, just before the ground dropped off to a creek, I found a dark, mottled headstone. It read:

PERMELIA A.
Wife of Jacob Van Valkenburgh
Died May 7, 1855
Aged 42 years, 3 mo, 5 ds

Near her was the stone of James, the 20-year-old son who died just two years before her. Along with losing babies Elizabeth, Huldah and George, did James’s death in 1853 lead to her decline?

Just a few steps away was her son Amasa, my great-great grandfather.

Amasa M. Van Valkenburgh
Died July 1, 1890
Aged 44 years

Here was another ancestor who died young. Amasa married at age 24, had five children with his wife, Christina Smith, and died in the middle of the summer.

Town records in Lexington, N.Y., eventually turned up his cause of death: “acute peritonitis,” which is an inflammation of the abdominal wall. Untreated, as it would have been in pre-antibiotic times, peritonitis leads to sepsis and death. What is still a mystery is what caused the peritonitis. It could have been a puncture wound to the stomach. It also could have been cirrhosis of the liver, which often leads to peritonitis. NIH’s Speaker said it would be impossible to know whether the peritonitis resulted from cirrhosis, a perforated gastric ulcer, a burst appendix or a ruptured gall bladder.

Buried alongside him was his wife, Christina. She went on to remarry and outlive a second husband. Christina passed away in 1946 at age 96. She would have remembered the Civil War, World War I, women getting the right to vote and World War II.

Of her five children with Amasa, two lived into their 90s, and another to 87. And her grandson, my grandfather Orrin, lived to 97.

Does this mean, then, that I could count on a longevity gene?

A study published in Genetics shut down that fantasy. Looking at 400 million people born between 1800 and 1920, whose information had been collected from public family trees in Ancestry.com, investigator Graham Ruby found that only about 10 percent of human longevity is inherited. Previous estimates ranged from 15 to 30 percent.

Our intuition is that long life spans run in families, Ruby said. And yes, genetics does contribute to life span, he said, “but to a much lesser extent than we thought.”

“Honestly, all of us were a little surprised,” said Catherine Ball, chief scientific officer at Ancestry, which collaborated with Ruby at Calico, a California research-and-development company.

“What this work has shown is not that longevity isn’t inherited,” she said. “It is inherited, but the cause is not often genetics.” In other words, humans also inherit money, property and social status, which also influence longevity.

Both Ruby and Ball said that a much more important role in longevity is “assortative mating.” In other words, people tend to marry people who are similar to them in location, socioeconomic status and education, and those factors also influence longevity. People are more likely to match the longevity of their in-laws than their ancestors, Ruby said.

The research showed fascinating patterns such as a drop in longevity about 1918, when World War I and the Spanish flu were killing millions, Ball said.

“Over time, the types of things that caused mortality were very different,” she said. “Infectious disease was a much more important killer then than now. Childbirth was not something you really wanted to go through.”

In other words, both researchers said, much of what foreshadows our longevity today involves healthy lifestyles and access to medical care more than genes. I didn’t necessarily uncover any clues about my own health ancestry in my research, but I did develop a greater respect for the enormous achievements of modern medicine.

Complete Article ↪HERE↩!