Health care fellows learn the tough task of discussing death and dying

Foundation’s fellowship program aims to expand number of health professionals skilled at discussing end-of-life issues with patients

By Gary Rotstein

Each Monday night for eight weeks, the group of aspiring physicians, pharmacists, social workers, medical ethicists and other future health care professionals met for three hours to talk about death — for the purpose of being better able to talk about death.

The 33 post-graduate students and other trainees spent time at a residential hospice, hospital and nursing home. They heard from palliative care doctors, geriatricians and other specialists. They talked with relatives of those who had died. They practiced end-of-life conversations with one another.

And by their last meeting this month, the participants in the Death & Dying Fellowship of the Jewish Healthcare Foundation learned how to broach a difficult topic with terminally ill patients and those individuals’ loved ones — a topic for which their formal studies typically provided minimal preparation.

“When you’re in front of a family crying their eyes out, it’s a whole different game,” said participant Tamara Means, a former medical resident who admitted that her past nervousness addressing such issues probably only made things worse for some seriously ill patients.

She and others learned during two months how, among other things, to listen better to patients and families; to look for cues that they’re ready to face up to mortality; to bring up death-related discussion in a non-judgmental way that respects different cultural values; to be able to consider emotions in addition to medical skills and technology.

The fellowship is one of a variety of Jewish Healthcare Foundation programs intended to promote a better end-of-life experience, including more personal planning and decision-making by those affected. The foundation’s officials believe the medical profession needs to do more to help patients address the potential failure of curative treatment, with too little taught about end-of-life conversations in medical school.

If existing practitioners won’t take the lead in helping seriously ill people prepare for their final stage of life, the foundation is counting on the field’s newcomers to do so. Since launching the annual Death & Dying Fellowship for that purpose five years ago, the program has drawn far more interest than officials anticipated, with all of its available slots filled again this year.

“You’re our apostles — 30 to 35 people who will go out and help hundreds of others learn how to talk about death and end-of-life,” foundation president Karen Wolk Feinstein told them April 1.

“There’s a lot more that can and should be done” in the way of core training in school, Michael Barkowski, a second-year medical resident at Allegheny General Hospital, agreed afterward while citing the confidence he gained from the fellowship program. “No matter what field we go into, we’re all going to work with patients who have chronic diseases and end-of-life illnesses.”

Some 2.7 million Americans die each year, and most die under medical supervision in a hospital or nursing home rather than in their own residence. Those who die at home have frequently been hospitalized late in life themselves.

So most individuals have interacted with medical professionals before death, but the fellowship program’s instructors say both sides often ignore end-of-life discussion, such as how much intensive treatment a patient would want if there’s minimal chance of benefit.

It’s easier to just avoid a topic that makes everyone uneasy, Robert Arnold, medical director of the UPMC Palliative and Supportive Institute, told the fellows at their final session. He noted that patients are fearful about the end of their lives and doctors lack incentives to discuss it.

“We collude not to talk about it,” he said, although palliative care specialists such as he have more time and training for that purpose.

“There’s nothing natural about this,” Dr. Arnold said while coaching his young listeners to make end-of-life care part of their professional “identity.”

They should be good listeners as to the expectations of patients and families, he said, and then offer themselves as guides to the decision-making that eventually will be required. Their knowledge, if shared properly, can assist patients in weighing the merits of more procedures versus more comfort.

Alexandria Abdalla, who is pursuing a master’s degree in bioethics from the University of Pittsburgh, said she always has had a fascination with death but knew little before the program about how to discuss it professionally. She said she has learned how to “read between the lines” of what patients are saying and acknowledge their emotions.

She put that to use recently when shadowing a geriatric oncology doctor at one of UPMC’s hospitals. Ms. Abdalla was left alone with an elderly woman temporarily after the doctor left her room. The patient mentioned her fears about her prognosis, and instead of trying to talk her out of it, Ms. Abdalla simply listened.

“Then I told her, ‘I’m sorry what you’re going through is so difficult — I wish we weren’t in this position,’” Ms. Abdalla said. “She seemed to appreciate just having someone to listen.”

Dr. Barkowski, the 29-year-old AGH resident who plans to specialize in palliative care, said he now better understands how to build relationships with patients prior to such a serious conversation. In a recent visit with a family in the hospital’s intensive care unit, he sought no quick responses when laying out the options for an elderly woman with advanced breast cancer.

“I went into it without any agenda like previously, when I might have wanted a decision within one meeting,” he said. “We talked every day for the next few days. … We were journeying together, like Dr. Arnold was saying — you’re an educated guide helping them understand the medical things happening, how severe things are, what the limits are of what we can do, learning about the patient’s values and aligning treatment with those.”

Ultimately, a decision was made to discontinue treatment — the patient had reached the point of requiring kidney dialysis on top of other issues — but it was in a manner that her family understood, accepting it as the right decision for the patient, who died within days.

“It’s all about building trust,” Dr. Barkowski said. “The listening is where everything starts, and the fellowship was able to build on that.”

The Jewish Healthcare Foundation expects to sponsor the fellowship again in early 2020 for individuals pursuing health care-related careers who are in graduate school or medical training. Application information will be made available later this year on the foundation’s website.

Complete Article HERE!

‘End Game’ Film Shows the Struggle in End-of-Life Decisions

The Oscar-nominated documentary also spotlights palliative and hospice care

By Deborah Quilter

In a pivotal scene of the documentary End Game, we listen in as a team of palliative care professionals discusses Mitra, a 45-year-old woman who is dying of cancer. Should they approach her about hospice? The hospital chaplain urges the group not to bring it up. She had spoken to Mitra’s mother, who told the chaplain that to Mitra, hospice means death. Dr. Steven Pantilat, a palliative care specialist, agrees with her assessment, noting: “Healthy people want to talk about how they want to die. Sick people want to live.”

This exchange in End Game (available on Netflix) captures human nature, and the delicate dilemma doctors and patients face at the end of life, under the best circumstances. Filmed in the serene hospital rooms and corridors of the University of California San Francisco Medical Center and the recently-closed Zen Hospice Project, situated in a tastefully-appointed Victorian house, we see firsthand the inner workings of hospice and palliative care.

We also see clearly how important it is to talk about these matters before we might need them.

Considering Palliative and Hospice Care

Though palliative and hospice care can greatly ease suffering, they are not easy to talk about or decide on for many patients. Some of the people in the 40-minute documentary are not ready to check out and seem to feel that accepting hospice care would mean accepting death. Their family members don’t want to let them go either.

Mitra’s husband hopes each new treatment will bring a miraculous recovery. Her mother knows her daughter will never walk again, much less recover from cancer and thinks her daughter is suffering. In one scene early in the movie, which is doubtless replicated in many hospital rooms every day, Pantilat asks Mitra’s husband and mother if they want to continue treating the cancer.

“If she were clear in her thinking and seeing herself in her bed the way she is right now, what decision would she make?” Pantilat asks. The question hovers in the air.

When Mitra’s sister flies in from Switzerland, initially there is jubilation over the reunion and we rejoice vicariously with the family. In the next scene, however, we see the sister collapsing in her mother’s arms in the hallway, weeping. Later, we see Mitra’s mother literally staggering down the hallway under the weight of her sorrow. We witness Mitra’s husband’s heart breaking, and their 8-year-old son playfully massaging his mother’s bald head.

There is joy, sorrow, love. The camera captures it all, but there is no narration. We witness the family’s struggles as they go through them in real time. This is part of the film’s power: It is easy to identify with the subjects. Viewers might feel they are losing their own family member.

The Filmmakers’ Vision: Bring Death Out of the Closet

The 40-minute film, directed by Rob Epstein and Jeffrey Friedman, was nominated for an Oscar in the category of Documentary Shorts.

The filmmakers, who won an Oscar in 1985 forThe Times of Harvey Milk, wanted to raise awareness about how palliative and hospice care can give us the right care at the right time. As Friedman explained, birth and death are universal life passages, and of those, death is the one we have the option of facing consciously.

“Most of us avoid thinking about it until it’s too late. By doing that, we set ourselves up to lose control of our life story when we’re at our most vulnerable,” Friedman says. “Couple that with medical technology so advanced that we can keep nearly everyone ‘alive’ using machines — but without taking the time to talk about what the quality of that life will be. The result is that far too many people are getting care they don’t understand and don’t want.”

End Game is about choices we make about how we want to live, when we know our time remaining will be brief,” Epstein adds. “One of our goals in End Game was to inspire conversations — not only about facing death, but about how we want to live, right up to the end.”

End-of-Life Care Explained

According to Pantilat, author of Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers, “Palliative care focuses on improving the quality of life for people with serious illness (whatever the prognosis). It alleviates symptoms like pain, shortness of breath, fatigue and nausea. It’s also about having patients communicate preferences and values, so the care team can attend to their psychological, spiritual and emotional support when they are sick.”

In the United States, hospice is a service to provide palliative care to people, largely at home. For hospice, the eligibility criteria include a prognosis of no more than six months of life and patients and loved ones who have agreed the focus will be comfort care.  Hospitalization, generally, will be avoided.

“Most of the time, hospice is not a place, but a service, although there are facilities focused only on hospice care (as Zen Hospice Project was). All hospice is palliative care, but not all palliative care is hospice,” Pantilat explains.

Many people have the misconception that once you choose palliative care, you’re not getting any other treatment for your illness. “That’s not true at all,” Pantilat says. You could have palliative care alongside chemotherapy, bone marrow transplant and many other serious illnesses. In fact, palliative care might help you live longer.

“There’s never been a study that showed that people who receive palliative care live less long. And there are studies that show that people who receive [palliative care] for the illness live longer. It’s an unmitigated good.” Pantilat says.

Help for the Family, Too

There’s another important feature of palliative care: It also attends to a dying person’s loved ones. The palliative care team will talk to family members and offer them comfort, options and counsel.

Pantilat notes: “When people ask, ‘When should my family come?’ I always say come now. If they get better and live for another six months or year or two, no harm, no foul. It’s one more visit. But if you try to time it when they’re really sick and on death’s door, they might be too sick to have a meaningful interaction or you might miss the opportunity. Things can happen suddenly.

“We try to have these conversations in advance and understand what’s really important,” Pantilat continues. “If visiting with your sister or seeing your daughter get married is the most important thing to you, now’s the time to do it. Maybe you shouldn’t wait 10 months for a wedding, because you may not make it. Instead, could your daughter move the wedding up to next month?”

And speaking of not waiting, the doctor has a message: “If you or a loved one has a serious illness, you should have palliative care. Don’t take no for an answer. Because it will help you live better and may even help you live longer.”

Complete Article HERE!

Why Do 4-Year-Olds Love Talking About Death?

By Jessica Grose

When our older daughter was 4, it seemed like she was asking us about death constantly. These questions were apropos of nothing; we hadn’t had a death in the family or lost a pet. What was jarring was her matter-of-fact tone. We’d be sitting at dinner and she’d ask a barrage of questions in a completely neutral voice: “When are you going to die? Is Grandma going to die first because she’s old?” And on and on. I tried to calmly match her tone and answer her honestly, but sometimes you just want to eat your salad without contemplating your own mortality.

At the time, I was slightly worried that there was something wrong with her — at best she was a proto-goth who would be really into the Cure as a teenager; and at worst, her questions meant she had some troubling anxiety that was emerging through a fixation on death. But when I started talking to other parents, I learned that their preschoolers were also asking tons of questions about death at awkward moments.

A lot of parenting questions boil down to: Is this a thing, or is something wrong? So I decided to start an occasional series explaining why certain things seem to happen to your kid (or to your body or your relationships) as your child grows. For this edition, I asked three psychologists, two of whom have done research on children and their understanding of death, about why preschoolers ask a lot of questions about death, and how to best answer them. If you have a question for a future “Is this a thing?” newsletter, email me here.

Why do kids start asking about death in preschool?

Preschool is the age of “why” in general, said Dr. Lauren Knickerbocker, Ph.D., a child psychologist at N.Y.U. Langone’s Child Study Center. And what adults sometimes don’t realize, because we’re inured to it, is that our kids are surrounded by death all the time: Cartoon characters die, the leaves on the trees die, an ant they smushed at the playground is dead.

Because they’re already so curious about the world, they see our reactions to their questions about death — our faces may blanch — and they pick up on that and want to dig deeper.

What do they understand about death at 4?

There are four subconcepts of death that psychologists have identified, explained Dr. Sally Beville Hunter, Ph.D., a clinical assistant professor at University of Tennessee, Knoxville: nonfunctionality (your body doesn’t work anymore), universality (all living things die), irreversibility (once you die, you can’t come back to life) and inevitability (you can’t avoid death).

Though children pick up these concepts at different ages, depending on their cognitive abilities and their life experiences, at 4, the subconcept they tend to understand first is nonfunctionality, Beville Hunter said. Because it’s straightforward, many preschoolers can understand that when you’re dead, your arms and legs don’t move anymore, and your heart stops beating.

“We’re all gonna die” is something that’s a bit harder for a 4-year-old (or let’s be honest, a 37-year-old) to fully internalize. But according to Beville Hunter, many kids will understand all four subconcepts somewhere in the 7-10 age range.

How do I answer their many, many questions about death?

Do not use euphemisms. Children in the 3-6 age range have very concrete thinking, said Dr. Dunya Poltorak, a pediatric medical psychologist in private practice in Birmingham, Mich. If you say something like, “Grandpa passed away” instead of “died,” it may confuse your child. She may think, “Did they go away somewhere? Are they on a trip? Did they pass over the border into Canada? It can just potentially risk greater confusion and lack of understanding,” said Poltorak. So use the term “died,” even if it feels harsh.

Try to respond simply and clearly. Don’t brush off their questions even if they make you uncomfortable, said Poltorak. And you don’t need to get into too much detail with kids this age, said Beville Hunter. So for example, if your child asks you, “When are you going to die?” You can say, “I try to take very good care of myself and to be careful and plan to live a very long time until I’m quite old,” Poltorak suggested. If kids have follow-up questions, they will ask.

If your kids are endlessly curious about death in a nonanxious way, you can take them on a tour of a cemetery, Beville Hunter suggested. It’s something she did with her own children. “We went around and read the names on the gravestones, we did etchings, we looked at the numbers and talked about the age they were when they died,” Beville Hunter said. It opens up a space for your kids to get answers to many of their pressing questions.

If a kid is anxious about death, “I would assure them of safety, health and everything within your family dynamic, then I would try to redirect from there,” said Poltorak. Try classic distraction after addressing their questions clearly — let’s go paint! Or, why don’t we read a book? If a kid is really ruminating and you’re concerned because his anxiety is affecting his quality of life, talk to your pediatrician. Your child’s doctor may recommend a pediatric psychologist. “It’s always good to intervene young when children have anxiety,” Poltorak said.

When you have a death in the family, Knickerbocker and Poltorak both recommend that grieving children memorialize loved ones with art projects. They emphasized the concreteness of preschoolers’ thinking, so having something to work on like a scrapbook of memories of that person is helpful.

If your religious beliefs include an afterlife or resurrection like in the Easter narrative, again, try to address any questions straightforwardly. You don’t need to overexplain or answer questions that weren’t asked, said Beville Hunter. Poltorak, who is Catholic, said she talks to her children about heaven and tries to keep it light. Her father, who was very close to her children, died recently. He used to bring candy over to their house all the time, so Poltorak tells them, “Grandpa is probably up in heaven giving Jesus cavities.”

Complete Article HERE!

Families in Europe were buried together during the Stone Age

By Chrissy Sexton

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

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

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

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

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

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

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

Megalith tombs on the British Isles

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

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

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

Complete Article HERE!

From diamonds to rockets, mourning the dead has gotten high-tech

In the 21st century, people have a widening range of options for preserving loved ones’ ashes.

Christina Martoia was 18 when her father died. Ten years later, she and her mother had his ashes transformed into this half-carat diamond. “Every time I show someone my memorial diamond, I get to talk about my dad,” says Martoia, the U.S. representative of Algordanza, the company that makes the diamonds.

By Glenn McDonald

Throughout history, people have devised elaborate ways to memorialize the dead: the pyramids of Egypt, Europe’s Gothic mausoleums, the Taj Mahal in India. What some mourners consider meaningful, others would call macabre. In 19th-century Europe and America, “death photography” produced portraits of the departed in lifelike poses; in the Tibetan Buddhist rite known as sky burial or bya gtor (alms for the birds), earthly remains are set out to feed vultures.

Notions about honoring the dead are shaped by many factors—culture, tradition, geography, religion. But the notion is one thing, and the execution is another. In every era, it’s the available technology that determines our range of memorial options.

The intersections of death and technology have long been busy crossroads. In these early years of the 21st century, they’re getting really interesting. Because I write about science and technology for a living, I’ve lingered at these intersections, observing the innovations: digital memorials on social media, eco-friendly green burial options, even interactive tombstones.

Among the tech-savvy options for modern decedents, one stands out because it’s so genuinely weird. Thanks to startling advances in industrial engineering, we can now synthetically re-create colossal geological forces to shape our ultimate destiny on this planet. It’s gratuitous and extreme and wonderful: We can turn our mortal remains into diamonds. Real diamonds.

Several companies worldwide now offer services to families that have the notion, and the resources, to memorialize their loved ones in arguably the most permanent way possible. The Swiss company Algordanza is one of them.

Using high-tech heavy-industry machines, engineers can transform the carbon from human ashes into diamond gems that are physically and chemically identical to natural diamonds. The geologic process that otherwise takes hundreds of millions of years can now be managed in weeks.

It works like this: After the cremation, the bereaved family ships one pound of ashes to Algordanza’s laboratory in Switzerland. Scientists process the ashes to extract the pure carbon elements and remove other impurities. (The remaining ashes are shipped back.) From there, Algordanza uses the same tools Mother Nature uses to make diamonds: heat and pressure.

In the next step, the carbon ashes are converted into graphite, a stable allotrope of carbon in which the atoms are packed into tight, flat sheets. Then the carbon settles down for a long bake inside Algordanza’s high-pressure, high-temperature (HPHT) machines. Temperatures rise as high as about 2,400 degrees Fahrenheit. For comparison, consider that cast iron melts at about 2,200 degrees Fahrenheit.

Then there’s the pressure. Within the HPHT machine, a system of cubic presses exerts a force of 870,000 pounds per square inch on the graphite, gradually changing the molecular structure and transforming the carbon into pure diamond.

To be clear, these diamonds aren’t just similar to a natural diamond; they are identical down to the atomic level. The gem that emerges can be kept in its rough state or cut and polished by Algordanza’s specialists.

The entire operation—from initial receipt of ashes to final delivery of the diamond—typically takes five to eight months. The company processes approximately 1,000 memorial diamonds a year and has representatives in 34 countries.

Algordanza offers packages with prices starting at about $3,000, says Christina Martoia, its U.S. representative. About that pricing—perhaps it’s impolite to ask, but we all want to know, right?

“The largest Algordanza memorial diamond produced to date was a 1.76-carat brilliant cut,” Martoia says. “The price was $38,000.”

While the hard science of memorial diamonds is fascinating—a billion years in a matter of weeks!—the price may be out of reach for us budget-minded afterlife planners. Death is already mandatory and largely unpleasant. Does it have to be expensive too?

Happily, another company has stepped into this odd little marketplace. Headquartered in Barcelona, the Spanish start-up Bios Urn offers a much more affordable high-tech memorial option.

By way of a smartphone app and a kind of interactive funeral urn, the Bios system lets grieving families turn their departed loved one into an indoor tree for their home. A capsule of cremains is bedded in a large pot, in which a seedling is planted. As the seedling grows, it sends roots into the cremains, and the Bios Incube automatically waters and cares for the memorial sapling. Built-in sensors monitor temperature, humidity, and soil conditions. Information beamed to the smartphone allows the family to nurture the sapling as it grows into a tree.

The company offers two versions. One provides the basic biodegradable urn and planter for $145. The more expensive version, incorporating the sensors and the app, is around $700. I could swing that, and I kind of like the idea of making my kids take care of me through my oaken golden years.

Will bytes replace gravestones?

A historian asks how we’ll mark death and memorialize loved ones in a digital future.

Katie Thornton, cemetery historian and Fulbright-National Geographic digital storytelling fellow

Katie Thornton has been thinking quite a bit about death. For the past few years, the cemetery historian has examined epitaphs and researched the “residents” buried at Lakewood Cemetery in her hometown of Minneapolis, with the goal of preserving stories for posterity. “A lot is at stake right now,” says the Fulbright-National Geographic digital storytelling fellow. Around the world, people are questioning whether cemeteries are a sustainable use of scarce land. “Without planning, the stories buried at cemeteries could be lost forever,” Thornton says—but technology may offer a solution. Thornton is launching a podcast, Death in the Digital Age, to explore how global urbanization and the rise of digital documentation are changing conventions for memorializing the dead, especially in England and Singapore. Thornton discusses her work on National Geographic’s Open Explorer platform. —Annie Roth

Candi K. Cann is one of the world’s leading experts on modern mourning. She teaches comparative religion at Baylor University in Texas and is the author of the book Virtual Afterlives: Grieving the Dead in the Twenty-First Century. She says that as a mourning custom, memorial diamonds and smart urns are really just modern iterations of much older cultural traditions. Both are associated with the psychological concept of continuing bonds.

The idea is that keeping the decedent in one’s life, in some form, is healthier than the detachment of, for instance, putting Dad six feet under. The diamond or the urn reflects “the need for continued rituals that incorporate and acknowledge the role of the loss of the deceased person,” Cann says. “It allows the living to grieve without being forced to ‘move on’ or forget the dead.”

If you’re interested in going down this particular rabbit hole, Cann suggests looking into the strange beauty of Victorian mourning jewelry. “The bereaved would take a lock of the decedent’s hair and turn it into wearable and functional jewelry,” she says. “Often the hair was woven into an intricate design and turned into a ring, a brooch, or a pin. Only the bereaved knew the origins of the hair.”

Cann says such jewelry is meant to serve the same function as today’s diamond or interactive urn—or yesteryear’s death photography, for that matter. It’s about people turning to the technology of their era to navigate death and dying. The Romans did it. The Persians did it. The Maya did it. We’re doing it with delicate microchips and massive machines. The technologies change, but the basic human experience remains.

Since I have some time (I hope), I plan to postpone any decisions until I’ve surveyed all my 21st-century options. Right now I’m leaning toward the tree. It’s more cheerful, and I’ve always admired the sedentary style of flora as a lifestyle choice.

Besides, that diamond thing seems like a lot of pressure.

Complete Article HERE!